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Does Everybody Have Chronic Lyme Disease? Does Anyone?

A deplorable article by Suzy Cohen on Huffington Post is titled “Feel Bad? It Could Be Lyme Unless Proven Otherwise.” It consists of irresponsible fear-mongering about a nonexistent disease. A science-based article would be titled “Feel Bad? It Couldn’t Be Chronic Lyme Disease Because CLD Is Nonexistent Until Proven Otherwise.”

Cohen says:

People often attribute uncomfortable symptoms to aging, stress, or the “aches and pains of daily living,” especially if blood tests and body scans are normal. What if you have Lyme and don’t know it? If you’ve ever been for a walk in the woods, laid in the grass, live in or visited a Lyme-endemic area, or have a pet cat or dog, you may have exposed yourself to Lyme disease and associated co-infections. There is even the possibility of contracting Lyme if you were born to a mother who has been exposed. Tick born infections can also be transmitted from blood transfusions.

That pretty much covers everyone. Who hasn’t been for a walk in the woods, lain down on the lawn, or had a pet? (And incidentally, are there no editors or proofreaders at HuffPo who realize that the past participle of lie is lain and that infections are tick-borne, not tick born?)

Cohen says:

Lyme is a multi-systemic illness, and may affect every part of the body causing fatigue, stiff neck, headaches, light and sound sensitivity, tinnitus (ringing in the ears), anemia, dizziness, joint and muscle pain, brain fog, tingling, numbness and burning sensations of the extremities, memory and concentration problems, difficulties with sleep (both falling asleep and frequent awakening), chest pain and palpitations and/or psychiatric symptoms like depression and anxiety.

That pretty much covers everyone. Who hasn’t experienced one or more of those symptoms? I’ve personally had 10 of them just in the course of the past week, none significant and none requiring a hypothesis like CLD for explanation. If I wanted to identify myself as “sick” and to believe these symptoms were due to a single underlying cause, it wouldn’t be hard to fit them into the CLD framework.

Cohen interviewed Dr. Richard Horowitz, who claims to have treated more than 12,000(!) patients for chronic Lyme disease and has dubbed it “Lyme-MSIDS” for multiple systemic infectious disease syndrome. He claims that most of his patients have a whole host of associated tick-borne illnesses such as Borrelia hermsii (relapsing fever), Babesia, Bartonella, Mycoplasma, Chlamydia, Rocky Mountain spotted fever, Q-fever, Ehrlichia or Anaplasma. He says that MSIDS

…involves not only the bacterial and parasitic infections mentioned above, but also associated viral and fungal infections, immune issues, inflammation, hormonal disorders, mitochondrial dysfunction (the mitochondria are the part of the cells responsible for energy production), sleep disorders, environmental toxins with heavy metals, and detoxification problems.

He says this is why:

… the standard treatment protocol (consisting of 30 days antibiotic therapy) doesn’t offer the cure for most sufferers. You can’t just blow up bugs. Detoxification, hormone balancing, heavy metal removal and ramping up immune function are equally important.

Criticism of “chronic Lyme disease”

Horowitz is one of the self-styled Lyme literate medical doctors (LLMDs), mavericks who have built a whole industry around diagnosing and treating something not recognized by mainstream medical science. A 2011 article in The Lancet exposed LLMDs for scientific misconduct, fraud, disciplinary actions, use of unvalidated laboratory tests, and other unethical activities. It also showed how activists have diverted attention away from evidence-based medicine and it expressed concern that their activities will endanger the public’s health unless responsible parties firmly stand up for an evidence-based approach.

In the Federation of American Societies for Experimental Biology (FASEB) Journal, PJ Baker, the executive director of the American Lyme Disease Foundation, wrote:

There is no better example of a relentless attack on evidence-based biomedical research and the integrity of outstanding scientists than that associated with the treatment of a poorly defined condition called “chronic Lyme disease.” Here, a scientifically naive general population, the lay press, and legislators, who in most instances are unable to evaluate and judge scientific evidence properly, have been misled by patient advocate groups to believe that extended antibiotic therapy is the best and only solution to this condition. This has resulted in the unprecedented intrusion of government and the legal systems into the practice of medicine and scientific research. Because there is no clinical evidence that this condition is due to a persistent infection, advocating extended antibiotic therapy is not justified and has been shown to be harmful and of no benefit.

An article in Environmental Health Perspectives said:

Lyme disease is a relatively well-described infectious disease with multisystem manifestations. Because of confusion over conflicting reports, anxiety related to vulnerability to disease, and sensationalized and inaccurate lay media coverage, a new syndrome, “chronic Lyme disease,” has become established. Chronic Lyme disease is the most recent in a continuing series of “medically unexplained symptoms” syndromes. These syndromes, such as fibromyalgia, chronic fatigue syndrome, and multiple chemical sensitivity, meet the need for a societally and morally acceptable explanation for ill-defined symptoms in the absence of objective physical and laboratory findings. We describe factors involved in the psychopathogenesis of chronic Lyme disease and focus on the confusion and insecurity these patients feel, which gives rise to an inability to adequately formulate and articulate their health concerns and to deal adequately with their medical needs, a state of disorganization termed aporia.

That article is worth reading in its entirely; the link is to the full text. It provides a lot of insight into how the CLD diagnosis evolved, why patients with medically unexplained symptoms welcomed it, how a science-based multidisciplinary approach might more effectively help these sufferers, and why most can be expected to reject that approach in favor of the simplistic understandings and false promises of the “LLMD” approach.

Two randomized trials published in The New England Journal of Medicine concluded that long-term antibiotics were no better than placebo.

Fallon et al. in the Open Neurology Journal have reinterpreted the existing human studies as showing a benefit of antibiotics. You can read their article and judge for yourself.

A 2007 article in The New England Journal of Medicine, “A Critical Appraisal of ‘Chronic Lyme Disease”, concluded that CLD was a misnomer, that it is only the latest in a series of many labels that have attempted to attribute medically unexplained symptoms to infections, and that antibiotic treatment is not warranted. The CDC agrees that so-called Post-Treatment Lyme Disease Syndrome should not be treated with long-term antibiotics.

Chronic Lyme disease has been addressed on SBM several times: here, here, here, here, and here.

Testing for Lyme

Cohen recommends testing for Lyme disease with IgM and IgG Western blot tests, and she specifically recommends IgeneX lab in California, a questionable lab that has been investigated because it reports positive results for Lyme disease that can’t be confirmed by other labs.

The CDC says:

…you should only have an immunoblot (such as an FDA-approved Western Blot or striped blot) test done if your blood has already been tested and found reactive with an EIA or IFA.

Second, the IgM Western Blot test result is only meaningful during the first 4 weeks of illness. If you have been infected for longer than 4-6 weeks and the IgG Western Blot is still negative, it is highly likely that the IgM result is incorrect (e.g., a false positive). This does not mean that you are not ill, but it does suggest that the cause of illness is something other than the Lyme disease bacterium.

Who is Cohen?

Suzy Cohen bills herself as “America’s Pharmacist”. She has a syndicated column and has written several books. She is “passionate about natural medicine” and promotes a number of nonsensical treatments, from Bach flower remedies to coffee enemas to acupuncture for tinnitus. An example of her spurious reasoning:

Antibiotics are actually derived from mold/fungus so it’s recommended that you avoid antibiotics if you have any fungal infection or various immune system disorders.

You are known by the company you keep. The usual suspects believe in CLD, including Joseph Mercola, Mike Adams, and Dr. Oz. Dr. Oz is a very agreeable man. He agrees with promoters of psychic surgery. He agrees with every new purveyor of snake oil who comes down the pike, with every new miracle solution for effortless weight loss. And predictably, he agrees with Cohen. He assumes Chronic Lyme Disease exists and is “either a chronic condition or an autoimmune response” or both. He quotes a scientist who says there is no scientific evidence for CLD; but he chooses to disregard him and believe Horowitz instead. Oz supports certain supplements to strengthen the body’s ability to repair itself: vitamin B12, coenzyme Q10, chromium, folate, omega-3 fatty acids, and herbs such as Rhodiola rosea.

There is even a Hollywood movie and proposed legislation targeting the evil establishment that is allegedly suppressing these new discoveries.

Conclusion

The belief that chronic Lyme disease exists is not supported by the evidence. It is a disservice to patients with unexplained symptoms to paste that label on them and treat them with potentially harmful long-term antibiotics. They are suffering, and they deserve our compassion and the best that science-based medicine has to offer, not bogus treatments by charlatans or well-meaning but misguided LLMDs.

Posted in: Science and Medicine

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982 thoughts on “Does Everybody Have Chronic Lyme Disease? Does Anyone?

  1. elburto says:

    Antibiotics are actually derived from mold/fungus so it’s recommended that you avoid antibiotics if you have any fungal infection or various immune system disorders.

    Wow. I’ve seen some bizarre woo “logic” in my time, but that’s incredible.

    The film about “Chronic Lyme” is appallingly bad, I couldn’t get all the way through it. There’s one segment about a whole neighbourhood who claim they have CLD, and they hang up flags to make it known.

    No doubt there’ll be an influx of people who believe that they have CLD, and will accuse you of being ignorant and of picking on them.

    BTW- Have you read From Paralysis to Fatigue by Edward Shorter? It’s an in-depth look at how these medically unexplained. “syndromes” or symptoms are always expressed in a manner that fits what the current public perception of how chronic illness looks. The “illness” reflects the socially acceptable expectation of what someone with an organic illness would look/feel like.

    In the early 1800s pseudoseizures were the expression of this need to fit society’s idea of sickness. Fits died out and were replaced by paralysis and something called “astasia-abasia”, inability to walk. Paralysis went out of vogue and was replaced with catatonia, “death spells”, and dissociation.

    That’s as far as I’ve got until now, but the book does cover things like chronic fatigue syndrome. It really is a fascinating history of entities like CLD .

    1. Harriet Hall says:

      I have read Shorter’s book and I highly recommend it.
      Another good one is Hilary Johnson’s “Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.”

      1. @HH – You’ve recommended that book before. I’d be curious how a historian can differentiate between trends in actual somitization and trends in misdiagnoses of unrecognized diseases or congentital conditions when looking at time periods before neurological conditions, auto-immune conditions, parasites, viral and bacterial infections, even hearing loss in some cases, was recognized.

        Wouldn’t that require some sort of large scale posthumous differential diagnoses on non-existent public health records?

        Off topic, I know, but maybe food for a future discussion.

        1. Holmes says:

          The article that HH said was worth reading for it’s insights was heavily influenced by (and cited) Shorter’s work. It was not an impressive piece of work.

          They point out a problems with MUS: “which some medical practitioners have come to view with an unjustified disdain (9) as being “all in your head.” ”

          Who would sink to promoting the view that MUS should be seen as “‘all in the mind’ and not to be taken seriously”? http://webcache.googleusercontent.com/search?q=cache:3mEMvlQcFaEJ:www.sjweh.fi/download.php?abstract_id%3D252%26file_nro%3D1+&hl=en

          While elsewhere HH rightfully argues that “Personal experience, while very convincing to the person concerned, has been shown over and over to be unreliable”, I think that more concern should have been reported as to the elaborate tales which that article built upon “clinical observations”.

          Imagine if the following paragraphs had been in a CAM publication:

          “The “energy” of feeling as if one does
          not “fit” into societal expectations probably
          exists in all societies. The different manifesta-
          tions (“packaging,” if you will) are defined by
          societal social norms and mores. The energy,
          like a vapor, expands to entirely fill and take
          on the shape and dimensions of the container
          offered…

          It is our premise that chronic Lyme
          disease is yet another in a long series of “con-
          tainers” for ill-defined suffering (the energy or
          “vapor” alluded to above), giving it form and
          illusory “substance.” ”

          “The suburban splendor of their
          dreams has been turned into a land of hidden
          perils and risks. The risk is the tiny deer tick,
          mice, and deer that come out of the wilder-
          ness at their backyards. An invisible threat
          from the wilderness strikes a primal “fear of
          the unknown” into the heart of the urbanized
          human, an animal totally dependent on
          vision to identify and avoid threats.”

          What a surprise that there are no citations to good supporting evidence for the ‘vapor’ theory.

          When it comes to MUS, it seems like it’s quack vs quack. Given the morality of someone like Shorter, his promotion of lying to patients and psychosocially managing them without informed consent, I’m not surprised that so many patients would prefer to go with the quacks who will only harm them with unnecessary antibiotics.

        2. Helene Taylor says:

          Harriet, I’ll make you a deal. Let’s find a tick with Lyme Disease. Let’s have you bite it. Let’s have you not see a competent doctor who tests you for Lyme for five, maybe six years. Now during this time, honey? No complaining. I mean, it may be in your head, it may be you not dealing with aging well, it could be your mid-life crisis, it could be that you are reflecting on your writing skills and contemplating another career, it may be that you are just depleted and stressed from life and need a vacation, it’s really, you know, all in your head. Watch some Oz, watch some reruns of Oprah, watch The Secret, see if you can manifest them away with yoga. But don’t take the antibiotics in that six week window they say will cure Lyme. Really…if you are a skeptic? GET BITTEN BY A TICK AND DON’T TREAT IT. And then, Harriet, you can come on over to my house where I’ve researched like a doctor for six years because of negligent people who probably were on the wrong side of history when HIV became an epidemic and now doubt Lyme exists, and I’ll listen to you, I’ll validate your symptoms, I’ll be skeptical full throttle because I’m not like those Ghost Hunters that hear a door creak and assume it’s a ghost, I’m those Ghost Hunters who try and find logical solutions to your fantasies. And as your Patient Advocate I’ll help you…why? Because my husband a Wall Street business man went camping 7 years ago and his body attacked him so violently but yet, gradually he is a shell of his former self and after a doctor prescribed him anti-anxiety medication we learned of Lyme by a kid straight out of med school. I have a hard time dealing with people like you….until you’re sick. So keep my name, honey, go up to the Catskills and find those ticks, throw in some Bartonella, or co-infection while you’re at it, and I’ll be here waiting to HELP and HEAR you.

          1. Rose Anastasio says:

            Amen sister. Couldn’t have said it better myself.

            Harriet, your ignorance disgusts me. Go away..PLEASE!

  2. ebohlman says:

    Wow. I’ve seen some bizarre woo “logic” in my time, but that’s incredible.

    That’s really just run-of-the-mill sympathetic magic. Similarly, most woomeisters who perseverate about chronic yeast infections advise their marks not to eat bread, since bread is made from yeast (the fact that bakers yeast is made from wildly different species than the ones claimed to be infectious and is in any case all dead after getting baked is irrelevant to them). The notion that a substance somehow retains the characteristics of whatever it was derived from is awfully common (but not sensible).

  3. stuastro says:

    Oh, the abuse I have received from going onto a youtube site regarding so called CLD. Not only abuse but also the crazy suggestions about cause, effect, treatment, chronicity. These people are passionate about CLD, as are most medically deluded people also passionate about their non-existent illness/es.

  4. Lawrence says:

    I’ve suffered through three separate bouts of Lyme Disease – nothing chronic about it, as I just happen to live in areas that are infested with infected ticks….

  5. AnObservingParty says:

    “Suzy Cohen bills herself as ‘America’s Pharmacist.’”

    I want to know who these people think have denoted them with these titles. Her rational behind not using antibiotics when in the midst of a fungal infection is also confusing, and quite frankly, scary. Pretty sure when I’m taking a β-lactam antibiotic I’m not actually ingesting penicillium. And I’m also pretty sure vanco is derived from Actinobacteria.

  6. stuastro says:

    Well ObservingParty, if you don’t expect much sense from people with so called “CLD” you willbe less surprised at their crazy comments

    1. vadaisy says:

      @9 bluedevilRA – There is another CNN article that precedes that one. It is written by a journalist who has a new book coming out soon about Lyme disease. What could be the odds of those types of articles being used to sway an unknowing public towards supporting doctors who are under investigation by law enforcement so as to help them retain their license to practice medicine?

    2. Carl says:

      CNN is such a rag for medicine. Just today they had a fake news article about how a better flu vaccine is “on the horizon”. It was actually just a summary of why flu vaccines are hard to make along with a brief description of the ongoing dream of having a flu vaccine which targets something other than the head of the whatchamacallit, with absolutely zero new information to suggest that we are any closer to it. The text itself was not technically bad, but someone stuck a fake breaking headline on top of it and contributed to the ongoing “science keeps promising things that never happen” view.

  7. vadaisy says:

    @7 Alan, That would be Lyme disease, not “chronic” Lyme disease. The magic is in the reporting, the counting of the disease occurrences. If the states do not report the correct figures to the CDC, then the CDC will have an incorrect count of how many people have been infected. Likewise, if physicians fail to report to their state when they have a patient diagnosed with Lyme disease, then their state, and the CDC numbers will be off.

    It is interesting how some of these “chronic Lyme disease” patients are walking around for 2 to 40 years with multiple other infections like chronic Rocky Mountain Spotted Fever. Shouldn’t they be dead after a week or so of untreated RMSF?

    1. Camp Other says:

      “It is interesting how some of these “chronic Lyme disease” patients are walking around for 2 to 40 years with multiple other infections like chronic Rocky Mountain Spotted Fever. Shouldn’t they be dead after a week or so of untreated RMSF?”

      I have a problem with the Rocky Mountain Spotted Fever diagnosis going unchecked early on, too. It’s not just you. That infection comes on swiftly, gets serious quickly, and can kill. I’ve seen no evidence of it being chronic.

      That said, other coinfections can be – and can even take a long time to become symptomatic post-bite. Babesiosis is one of them. It can take several months after the initial tick bite to be present.

      It’s important to be informed about the nature of each tickborne disease, which ticks carry them, and which ones have evidence supporting their persistence and any documented potential for a latent period. Knowing these facts can help in making the correct diagnosis.

  8. araikwao says:

    Thanks for this post. A colleague of mine was just telling me about how her doc (who has been treating her for another chronic infectious disease) has now diagnosed her with (presumably also chronic) Lyme disease. Except that we live in Australia. Google tells me we have a whole population of CLD sufferers, even though we don’t have Lyme disease here. I will now try to think of a gentle way to share some of these links with her. Wish me luck!

    1. Bambi Albert says:

      Lots of lyme in Australia, where u been?

    2. Bambi Albert says:

      are u an idiot, lyme disease is in every country, I’ve been living with it since 1997 stroke because of it in 2006 and it “flares” at least once a year, yup, I’d say its chronic. Unless you live with it or know someone that does, your opinions mean nothing to me.

      1. WilliamLawrenceUtridge says:

        How about the opinion that what you are describing might not be chronic Lyme disease? You might have post Lyme syndrome, a genuine, medically recognized sequelae of verified Lyme infection that has a different set of symptoms than the vague and ever-shifting set of chronic Lyme disease (without any history or evidence of Lyme infection).

        1. Bambi Albert says:

          how bout I put you in a room full of ticks for 24 hours, don’t treat you for a couple weeks and see how you feel.

          1. WilliamLawrenceUtridge says:

            Yes, that would be unpleasant, since I would develop Lyme disease. But what does that have to do with chronic Lyme disease, alleged to develop after treated real Lyme disease? Or imagined, never verified, highly unlikely Lyme disease?

          2. Db says:

            William Lawrence you would develop Lyme disease but without prompt treatment is when it would spread to what people call chronic Lyme disease.. It will spread and hide and you two week doxycycline won’t kill it at that point but ” you will be healed ” ( not )

  9. windriven says:

    But wait … there’s more!

    “Dr. Richard Horowitz, MD, in Hyde Park, New York, has treated over 10,000 Lyme disease patients. Whoa. That’s a lot of people. So when he recently spoke at a LIA (Lyme-Induced Autism) conference, I really listened. I figured, somebody who has treated thousands of people has got to know a thing or two about how to treat this confetti of infections we call Lyme disease.”*

    Lyme Induced AUTISM??? Where is Jenny McCarthy when we need her. Everyone knows that autism is caused by thimerosol in vaccines.

    I stumbled over this while trying to learn a bit about the distinguished Dr. Horowitz. You will be relieved to know that there is a Lyme Induced Autism Foundation** and there are (online) Lyme Induced Autism Conferences. You will note that the Lyme Induced Autism Foundation as a .com URL rather than .org. Interesting.

    *http://www.dailystrength.org/c/Lyme_Disease/forum/10947611-dr-richard-horowitz-md
    **http://www.lymeinducedautism.com/

    1. vadaisy says:

      @Winddriven, In the article you mentioned, did you notice the comment where he suggests the use of NAET for the treatment of Lyme disease? “Enzyme therapy and NAET (an allergy technique) are likewise beneficial. “

      1. windriven says:

        @vadaisy

        I hadn’t noticed and wouldn’t have known what it is. This from the NAET site:

        “A holistic treatment for the permanent elimination of food and environmental
        allergies, which may be the cause of a wide range of illness.”

        Every time I think I’ve become terminally jaded the freaks and quacks prove me wrong.

        Thanks for pointing that out to us.

      2. windriven says:

        OMG! Go to the Nambudripad’s Allergy Elimination Techniques Wikipedia entry! It had me rolling on the floor. This nonsense was invented out of whole cloth by a chiropractic student and acupuncturist in 1983. She later claimed an MD. Unfortunately it is from a medical diploma mill in Antigua or somewhere and isn’t recognized in CA where she apparently lives. Maybe it should be pMD (pseudo Medical Doctor).

        1. vadaisy says:

          Hey, windriven, don’t knock it till you’ve tried it. I’ll save you some time – it doesn’t work. It’s just another version of expensive woo for sale, quite similar to Applied Kinesiology if you ask me. Lots of licensed medical practitioners charge their patients for this type of treatment. They then bundle the woo-service in with their other patient charges so as to get reimbursed from Medicare and private insurance carriers.

          1. Nashira says:

            There is an excellently funny line in the Wikipedia entry for NAET: “several medical associations advise against using applied kinesiology in this way.”

            Thus implying, of course, that there are valid uses for AK.

        2. vadaisy says:

          NAET is such an obvious practice of pseudo-science that it should reinforce the dangers of states licensing Naturopaths, Acupuncturists and Chiropractors. It is these alternative medical professionals that practice such quackery as NAET. When these providers are entrusted with a license to practice medicine, it gives them an air of respectability and patients will be mislead into believing that their treatments have some basis in the responsible practice of medicine, when they do not.

        3. From the Wikipedia entry:

          Allergens may be any of a wide variety of substances, as well as more abstract notions such as emotions and colors.

          In that case, let my medical records show that, in addition to my environmental allergies, I am also allergic to anger and mauve.

          1. vadaisy says:

            Mauve and anger are everywhere. You will require a lifetime of medical treatments for such persisting conditions.

  10. Oh, dear–she’s a Registered Pharmacist.

    Is the same disconnect that convinces people they have a condition (I’m thinking about the process described in the book elburto mentions) turn supposedly educated people (Cohen, Oz, for example) into quacks?

  11. vadaisy says:

    An article in the Norway press reinforces the importance of doing ethical human research studies, and warns against uncontrolled human experimentation by maverick “chronic” Lyme disease doctors “How it looks like they may have violated Health Research Act, which states that new methods should be tried against the best available methods that exist. It does not seem that they have done. They have only taken it for granted that the method they have developed works, without doing anything attempts to verify or validate it, says Aavitsland to NRK.no.”

  12. Young CC Prof says:

    Man, the Chronic Lyme people drive me nuts. I live in a tick-endemic area, I grew up with the fear of ticks, and I’ve seen lots of people get the disease and be successfully treated in the first stage. I also know someone whose Lyme wasn’t diagnosed until it progressed to grossly swollen knees. I saw babesiosis strike my grandfather suddenly, and visited him in the hospital over the next two months. (If you’ve never seen a 106 fever in an 86-year-old man, trust me, you don’t want to. It really is like malaria.) He survived, though he walked with a cane for the rest of his life.

    These diseases are real, they can be very serious. That’s what makes the CLD scammers so credible, and therefore so dangerous. Occasionally lab tests ARE wrong, for one reason or another, and someone with chronic unexplained symptoms generally wants to believe there’s a reason for it. Lyme test negative? Must be a false negative. Take antibiotics, feel worse? That’s not a side effect, that’s a Herxheimer reaction. Take antibiotics, feel better? That’s not the natural variation of your condition, that’s the drugs working. Take antibiotics, feel no change? Must be the wrong one, or too weak a dose, or not taken long enough.

    GRRRRR.

    1. whencarsfly says:

      When you CLD scammers what exactly are you referring to?

    2. Jonathan M Neilio says:

      It’s okay, just let these crazies have their delusions. I have Lyme and trust me its a horrible experience.

  13. Ugg. I used to read HuffPost but they are way too Woo for me. Some people want a diagnosis for their ailment especially those with psychosomatic complaints. For them this “diagnosis” is confirmation to their belief in a “real” physical complaint and in some cases a validation. This is not to discount the psychological as non-physical. There is no mind body separation. But their “condition” is created in their mind and made manifest by their confirmation bias and perception of physical complaints.

    Unfortunately it is not a real diagnosis and does not help those with psychosomatic complaints deal appropriately with their underlying cognitive dissonance. Like those in the Autism/Vaccine realm they want someone to blame. They don’t like the answer “we don’t have a diagnosis for you.” They want something tangible to focus their ire. Of course peddlers of snake oil science are a supply and demand enterprise (in some cases demand and supply when they create a condition that does not exist in reality).

    They (snake oil peddlers) prey upon those who are susceptible to suggestion. As so many people are scientifically illiterate (my hats off to Alan Alda and the Center for Communicating Science) and any little sprinkling of sci-ency sounding words appear to give credibility to the words spun by these spiders. I myself would like to see more critical thinking courses in college and high school but then again I am a dreamer.

    Ultimately I would like to see these individuals held accountable for their words. I would like to see them take responsibility and if not willing to do so voluntarily then legally for the harm they cause. People have the right to free speech but this does not give them cart blanch to spew whatever misconception is floating around in their head without repercussions. Words have power and that power when used without regard to what people do with those words is extremely dangerous. Oprah tried to use the Oprah-Clause when she defended her support of woo on her show without regard to what people would do with that information “I trust the viewers, and I know that they are smart and discerning enough to seek out medical opinions to determine what may be best for them.” This does not erase her public responsibility anymore than the health Miranda at the end of supplement commercials. Once the genie is out of the bottle, you can’t put him/her back in.

    Suzy Cohen appears to have the air of infallibility. She suffers from a significant case of hubris and chutzpah. Her inability to see that her critical thinking skills are wanton leaves her susceptible to magical thinking. That she has given herself the moniker of “America’s Pharmacist” shows her lack of humility. Her argument from authority bears no scientific credibility. I have worked with many lettered individuals who had no common sense. In my estimation and humble opinion she is no better than any sociopath who has caused mass panic. As broad as the diagnostic criteria is for CLD I suppose by her train of logic, everyone has it.

    But then again, I might be wrong.

  14. weing says:

    I treat patients with falsely negative Lyme tests under 1 circumstance. They have the classic ECM rash. The test may be still negative.

  15. Melissa Bell (FALDA) says:

    Contrary to this poor excuse of journalism, there is ample evidence to support persistence of infection. Moreover, the studies cited above for the proposition that long term antibiotics do not work have come under substantial criticism. Indeed, Allison DeLong, a biostatistician at Brown University’s Center for Statistical Sciences and lead author of the study published online Aug. 19, 2012, in Contemporary Clinical Trials, concluded the four studies do not prove that retreatment does not work. http://news.brown.edu/pressreleases/2012/08/lyme

    It is absolutely clear that more research is required.

    It is critical to note that there are two separate standards of care for Lyme Disease, both of which rely upon evidence based science. Through our journey, we have learned that all aspects of Lyme Disease are controversial. There is a tremendous divide as to the appropriate standard of care. According to the CDC and IDSA, Lyme Disease is hard to catch and easy to treat with 30 days or less of antibiotics (even if the infection has become disseminated and/or there are co-infections). ILADS trained doctors, known as Lyme Literate Medical Doctors (LLMDs) believe that persistent symptoms after initial treatment reflect on-going infection and gauge the duration of treatment by the patient’s individual clinical response.

    We have seen first hand that our son, who was misdiagnosed for nearly a year and presented with four documented co-infections in addition to Lyme Disease, was not “cured” after 30 days of antibiotic treatment. Due to the substantial misinformation about Lyme Disease, our son suffered needlessly for nearly a year, with excruciating migraines that could only be relieved with morphine, over 40 debilitating symptoms of Lyme, and fatigue so profound that he could not walk many days. We are absolutely convinced that if our son had followed the IDSA guidelines, he would be in a wheelchair right now in a declining cognitive state, rather than returning to school and participating in sports once more. It is easy to throw darts, when it is not you or a loved one suffering profound, life altering symptoms of late stage neurological Lyme Disease.

    For a more balanced, informed discussion, I highly recommend the following resources:
    Cure Unknown, by Pamela Weintraub (a scientific journalist who cites ample authority)
    Research supporting persistent infection: http://www.lymeinfo.net/medical/LDPersist.pdf
    Dr. Raphael Stricker and attorney Lorraine Johnson, have written several articles addressing evidence-based medicine and Lyme disease. Three key articles include:

    Johnson L, Stricker RB. Treatment of Lyme disease: a medicolegal assessment. Expert review of anti-infective therapy [serial on the Internet]. 2004; 2(4)

    Johnson L, Stricker RB. Attorney General forces Infectious Diseases Society of America to redo Lyme guidelines due to flawed development process. J Med Ethics [serial on the Internet]. 2009; 35(5)

    Johnson L, Stricker RB. The Infectious Diseases Society of America Lyme guidelines: a cautionary tale about the development of clinical practice guidelines. Philos Ethics Humanit Med [serial on the Internet]. 2010 2901226]; 5

    http://lymedisease.org/resources/evidence-based-health.html

    1. vadaisy says:

      As much as you may repeat it, repeating it does not make it so. There are not two “standards” of care for the treatment of Lyme disease. Johnson is a lawyer with a lot vested in defending the “LLMDs”, including her personal creation with Phyllis Mervine with LymeDisease.org, formerly California Lyme Disease Association (CALDA), and ILADS. Stricker was kicked out of a major university and banned from receiving federal research grant money due to his falsifying clinical research findings for his HIV/AIDS study.

      Why don’t they stick to one controversy at a time? Why don’t they focus on their other pet project of Lyme being the true cause of Autism? Or, perhaps ILADS’ Dr. Bransfield can focus on his evidence that Lyme disease is the true cause of homosexuality. Face it – people are sick and the medical community has not yet determined the best course of treatment, but it is unethical to conduct these for-personal-profit, uncontrolled and unsupervised experiments on humans in the manner as is happening with these self-styled “Lyme-literate” doctors.

      1. whencarsfly says:

        So why do you object so strongly to patients having the option to choose a doctor and treatment that is most effective for their illness? Whatever it may be. I assume that it is your feeling.

        Interesting how big Pharma is blamed for being behind the CLD diagnosis yet it is the one thing they don’t have a specific drug to treat with. MS and many of the known illnesses that can be symptoms of CLD do have a drug for treatment.

        Would you support a vaccine?

        1. vadaisy says:

          Interesting how big Pharma is blamed for being behind the CLD diagnosis yet it is the one thing they don’t have a specific drug to treat with. MS and many of the known illnesses that can be symptoms of CLD do have a drug for treatment.

          No clear thinking people I know are blaming Big Pharma for being behind the CLD diagnosis. Those allegations are coming from the Lyme disease associations and “LLMDs” so as to win favor amongst those that distrust pharmaceutical companies* and the government regulators.

          *In many cases Big Pharma has earned such distrust, but “chronic Lyme” disease is not one of those instances.

        2. vadaisy says:

          Would you support a vaccine?

          The success of the last Lyme disease vaccine was destroyed by activists. You need to pose your question to them, or perhaps that would include yourself? I wonder if “Dr.” Marra would support it this time around.

          1. whencarsfly says:

            @vadaisy said “The success of the last Lyme disease vaccine was destroyed by activists” It was activists or litigation brought on by safety concerns? If you’d do your homework you’d discover that activists originally campaigned for a vaccine which led to the failed Lymerix vaccine.

            Oh bother.

    2. ab says:

      The links you provided are riddled with quackery and woo. If you are the same person who posted the following to Facebook, you really need to get some professional help. If you are putting your children through these quack treatments, it is akin to child abuse.

      “Melissa Ferwerda Bell I have 3 children with Lyme Disease (13, 11, 5), one which was very ill in early 2012, but doing much better now. There are two doctors in FL that treat children, 1 of which that accepts insurance. I will message you 2 names.”

      1. Melissa Bell (FALDA) says:

        There are at least 77 peer reviewed studies confirming persistent infection. Fancy words like “quackery” and “wood” do not refute this established science. Confirmed bacterial infections require antibiotic treatment. If an ear infection is not resolved after standard treatment, it is not controversial to extend treatment. Adolescents are often prescribed Doxycycline or Minocycline (2 antibiotics used to treat Lyme Disease) for years for acne. Judge all you like, but my son is doing remarkably better now. We no longer take a child’s ability to laugh, go to school, or even walk. Judge all you like, but we saved our son. I suppose you would be happy to watch your own child deteriorate, languish and suffer. Now that is child abuse.

        1. Melissa Bell (FALDA) says:

          “Woo” not “wood”. All diagnosis are confirmed with labs.

          1. Harriet Hall says:

            The question is whether those labs are reliable. There is reason to think they are not.

          2. ab says:

            Right. “CLD” and “CLD” treatments are “woo”. Whose lab? Dr. Nick? Dr. Johnny Fever?

        2. whencarsfly says:

          Amen to that Melissa! Typical treatment for an ear infection is not “psychiatric treatment” to deal with the pain as it was for my son’s chronic Lyme Disease.

          Were it recognized and treated clinically by the first doctor we saw, he would not have had to spend 1-1/2 years in complete darkness while being treated for his Chronic Lyme Disease and co-infections.

          Thank God there are still a handful of doctors who care more about their patients than their egos and are able to think for themselves…they are saving lives.

          1. Melissa Bell (FALDA) says:

            @whencarsfly – I hope your son is on the road to recovery. I have heard that the plaintiff’s bar is gearing up to more vigorously litigate failure to diagnose LD cases. It is about time that doctors who ignore a clear clinical presentation of Lyme Disease be held accountable for failure to timely diagnose.

            @Harriet Hall – multiple labs have confirmed multiple infections, including Quest and Labcorp. It sounds as though you are trying to question iGeneX, which has exceeded 98% on the past 9 years of proficiency ratings. In comparison, numerous peer reviewed studies have concluded that the CDC’s surveillance criteria (that doctors mistakenly often use to “rule out” Lyme”) misses approximately 1/2 of actual cases. This is part of the surveillance program that the CDC now concedes misses at least 90% of actual cases.

    3. WilliamLawrenceUtridge says:

      ILADS trained doctors, known as Lyme Literate Medical Doctors (LLMDs) believe that persistent symptoms after initial treatment reflect on-going infection and gauge the duration of treatment by the patient’s individual clinical response.

      I’ve highlighted the relevant word in this section. People believe lots of stuff, that doesn’t make it true.

      1. whencarsfly says:

        Would it help if you replaced “believe” with “understand”? As in, I believe you should better understand the topic about which you are commenting…

        1. WilliamLawrenceUtridge says:

          In the absence of a reliable diagnostic test or indicative symptom (such as the bulls-eye rash which is essentially diagnostic when it appears), you are guessing at a diagnosis. In some cases, the guess is reasonable (influenza, rarely lab-confirmed, sometimes dangerous). In some cases, the implications of the guess are minimal (rhinoviruses, no treatment). In this case, the guess is speculative (the symptoms are not diagnostic), unreasonable (the symptoms of quack chronic Lyme bear no resemblance to either Lyme or genuine post-Lyme syndrome) and dangerous (treatment is bad for the patient, and bad for society, as antibiotic-resistant infections are nasty for everyone who catches them, and the “CLD” patients with an indwelling catheter is more likely to catch one).

          And yeah, I might not be up on the latest thinking on Lyme disease. But the people who wrote peer-reviewed articles on the topic in 2010, 2011 and before then – are. I trust the experts. The experts say CLD is likely unrelated to Lyme. Meanwhile, patients, attorneys general and LLMDs must resort to unscientific popularity contests and touching anecdotes to muster the social capital necessary to force the delivery of unsubstantiated treatments. I’m sorry you find this frustrating, but I trust the experts.

          1. janetS says:

            Sources, please? I have never heard of anything of which you speak, and I am something of an expert on the topic.

          2. WilliamLawrenceUtridge says:

            For the peer-reviewed articles? Dr. Hall cited them in her post. Are you an expert only on the “pro” side of CLD, or are you up to date on the criticisms as well?

  16. Cody says:

    As a Pharmacist, I’m embarrassed to share a profession with this woman.

  17. WilliamLawrenceUtridge says:

    @elburto

    Is there an updated version? My library has only one book from 1992. Have any comparable books been published more recently, that you are aware of?

    Shorter’s books all look interesting, he must be a medical historian?

  18. TBruce says:

    Stricker is also an advocate of Morgellons. Seriously nuts.

  19. Onetruth says:

    Be guilty of a half truth and call yourself honest….. No abx will not cure chronic Lyme because the root cause of chronic Lyme is immune destruction and dysregulation just like with every other disease. In other words, like AIDS, they’ll skate you by until you die. OspA, ever hear of it, idiots?

    1. windriven says:

      Did someone open a sewer?

      1. Flintstone says:

        The doctor is being sued and is under investigation by the New York State Medical Board. So the answer to your question is Yes.

        1. whencarsfly says:

          Oh, I see what you did there Flintstone…pure genius. Now get to work, don’t you have a paper due on Friday?

          1. windriven says:

            “Oh, I see what you did there Flintstone…pure genius”

            Wow, can’t slip anything past you, huh? Oh, my bad. Flintstone expected you, or at least everyone else, to get it. And what’s the deal with the crack about the paper due? Are you just anti-intellectual? A pure philistine? That explains quite a bit.

    2. janetS says:

      OspA = Immune suppression.

  20. Onetruth says:

    Hmmmmm, Copaxone not working? Guess that means I don’t have MS.

  21. vadaisy says:

    …environmental toxins with heavy metals, and detoxification problems.

    Dr. Stephen Barrett has written in detail as to how the “Urine Toxic Metals test” is used to defraud patients.

    Everyone reading this article is urged to also read Dr. Barrett’s research as to how this provoked test is used to mislead and exploit patients.

  22. Nashira says:

    Thank you for writing about this. I had to stop speaking with a dear friend because she’d been mislead into believing CLD is a thing. She had months of IV antibiotics, landed in the hospital with PICC problems, both of which are awesome when you have a latex allergy; and was married to the bathroom due to significant gastric distress. And that all was at barely half the ridiculous super-high dose that her ‘LLMD’ really wanted her on. This doc never considered that maybe her illness was mental, despite her bizarrely restricted diet, incredible thinness, panic attacks…

    The treatment cost thousands of dollars she didn’t have, and stole her mobility until she could barely get around her own home. She could not be persuaded that it was anything but CLD, and I couldn’t bear watching her deteriorate… nor to watch her persuade others in that group that they had CLD too.

    LLMDs have so many cheerleaders who pretend they do no harm and that SBM-style docs are unreasonable, wrong, etc etc. It makes me genuinely, deeply angry, and it got worse after seeing them take sick people and make them sicker instead of directing them to actual help.

    1. vadaisy says:

      @Nashira, there are some illnesses for which there is no known cause or no known cure. Consider that your former friend may indeed be ill, but was treated dismissively by her other physicians and perhaps some of her friends, so she sought care and compassion from wherever she could get it. It’s unfortunate that she likely didn’t have anyone willing to methodically and rationally explore with her any other possible causes of her illness. That said, some people with Lyme disease do develop on-going symptoms after the infection has been treated. It is referred to a PTLDS, post-treatment Lyme disease syndrome. You can find more information about it on the CDC website.

      1. Nashira says:

        Oh no, I didn’t mean to sound like I blamed her! Or like I thought it was ‘all in her head’. Should not comment on lunchbreak when time is short. She was ill, no bones about it. It just wasn’t chronic Lymes disease.

        Really and truly, I think the people at fault were the predatory woosters, who fed her medical phobia and convinced her that The Cure for her chronic conditions was out there, so long as she met the right maverick doctor. It isn’t hard to sell the idea of A Cure to someone who has lost a lot due to becoming chronically ill.

        I know she had a difficult time finding doctors who would acknowledge both her physical and mental/emotional symptoms without writing her off as ‘hysterical’. And a hard time finding a counseler whom she could afford *and* that she meshed with, capable of treating someone with multiple long term, chronic conditions. Comfort and caring were not something she had had a lot in her life, especially after her physical issues began.

        The ‘LLMD’ did listen to her and made her feel cared for, but only the better to lure her in. :( He never even mentioned PTLDS to her, iirc, since that would’ve meant less cash in pocket. It wasn’t and isn’t different from the usual methods that SCAMmers utilize, I know.

      2. whencarsfly says:

        Correction it is referred to by the CDC and the IDSA as PTLDS as a way to confuse the issue. The fullness of time will confirm that assertion to be false.

    2. nancy brownlee says:

      @Nashira- I have a sister who has suffered from CLD for at least a decade. She also suffers from chronic, systemic ‘yeast’ infection, adrenal collapse, sub-clinical fibromyalgia, and, for all I know, Morgellons and nocturnal alien abduction. She has drunk gallons of homeopathic, herbal, and mineral preparations, douched with Lysol and enema’d with coffee. She’s 64, and every single ‘treatment’ has brought her, by her own assessment, a measure of relief. And yet- somehow- she is never cured. She can talk for hours about her ailments, and the more attentive her audience, the more brisk and lively become her recitations. Leave her alone for a week, and she droops and swoons into a decline.

      She is certainly suffering, and for many years I have believed that whatever the ebb and flow of her complaints, she certainly suffers from some kind of somatoform disorder. She’s not going to get better. I just hope the quacks don’t kill her.

      1. Nashira says:

         ”I just hope the quacks don’t kill her.”

        Me too. This line here goes through my head every time I learn about yet another form of quackery trying to con vulnerable people. Especially when it causes them to avoid efficacious treatment as though it were poison.

  23. Carl says:

    Dr. Richard Horowitz, who claims to have treated more than 12,000(!) patients for chronic Lyme disease

    One of those patients was someone I knew. One day we drove them to their regular appointment with Quack Horowitz. I was very young the first time I saw him, but I remember that he managed to work his nice new book into the conversation (both verbally and physically–literally holding up his book as he mentioned it like an infomercial) and I distinctly remember him saying that he couldn’t convince “them” (an unspecified non-present entity) that longer treatment was needed beyond a standard period.

    YEARS later I found out that Qk. Horowitz was stilling giving this person regular antibiotic IVs (I didn’t know what antibiotics were the first time, but I did when I heard it mentioned subsequently). He was also prescribed an enormous load of various things for some supposed metal poisoning. The whole time, Qk. Horowitz was telling him that he had the worst Lyme infection in the state.

    12,000 sure is a lot of people. Given that he keeps his patients on the hook for regular appointments for years, it doesn’t leave him much time for anyone else. The math makes me wonder if Qk. Horowitz ever met someone without deciding that they had Lyme.

    1. whencarsfly says:

      Perhaps one of those 12,000 patients Dr. Horowitz has helped could be made available here to comment. You know, someone with actual experience in dealing with the Chronic Lyme Disease beyond just a philosophical discussion.

  24. Rats, I typed a rather long comment that seems to have gone astray due to high traffic. I guess I’ll give it awhile in the hopes that someone finds it in the moderation queue.

    1. vadaisy says:

      Start typing again, Mouse.

      1. You know that feeling that sometimes happens just after you hit “post comment” when you realize that writing the comment was time consuming enough that you REALLY should have saved the text into your email in case it got eaten by the blogging comment monsters? Yup, that was me.

        1. Alan Henness says:

          You need the Lazarus plugin for Chrome and Firefox (not sure about other browsers). It does what the name suggests: saves your comments as you type them so you can resurrect them if needed! Absolutely essential…

        2. Kathy says:

          I know the feeling well, Mouse. Oh Mouse, I really FEEL for you! I’m such a sincerely sympathetic person. I have walked the same sorrowful road as you are now on (grinning smiley).

          You see, my laptop has SCLD (severe chronic laptop disease). Symptoms are that it keeps on losing things, having periods of … of … (er, what was that?), disconnecting from the Internet and refusing to send messages even when very politely requested.

          I’ve become convinced that it is infected with a virus/bacterium/fungus/toxin. I did some research on the Internet for myself (I am a very clever lady! I know how to surf!) and found lists of the same symptoms on a website that is kindly put up by an altruistic computer security company to help those under attack.

          But do you think that I can find a p.c. doctor that can help me? The last one I took it to insisted there was nothing the matter with my beloved laptop – bar age of course. But I just KNOW he is an evil BigComp shill, and wanted to sell me a new one! I must therefore just keep searching till I find someone who agrees with me.

          1. vadaisy says:

            @Kathy – Oh, Kathy! I’m so sorry you are suffering. Mouse, you too. I feel for both of you. But don’t you worry. Don’t fret so. I am here to help you. I can ease those laptop worries. In fact, those laptop illnesses are effecting the other areas of your life! I bet you didn’t realize that? That’s ok, everyone makes mistakes. You really do look quite ill. I’m sure you just don’t recognize your illness because you aren’t thinking clearly. Damn that Laptop fever. It effects everyone differently so it’s no wonder your thought processes are so profoundly confused. I understand, you poor, poor dears.

            It’s going to be a long, tough road to recovery. You will have to follow my instructions to the letter. I will be spending a lot of time on your case, and you know, that is a large laptop you own. As such, my fees will unfortunately have to be large in proportion to the gravity of your situation. Don’t worry though, if you follow my every word, take your medicine as directed, you will survive and go on to have daily use of your laptop. If you don’t follow my advice, then well, I’m sorry. Did you say you preferred to rest at peace in the ocean, or under tranquil green pastures? Oh, never mind, that won’t happen – follow my protocol and you and your laptop will survive, I haven’t lost one yet. Just read my testimonials and you will know.

            First things first, many doctors here at SBM think I’m a quack. Let me assure you, I am not a quack. The medical boards think I’m a quack too. I’ve been found guilty of all sorts of quackery, or so they claim, but they are all fools. I know more than all of them. I am the expert, not them. I’m here to save the world from Laptop fever, and every other illness. It’s really as I said earlier, all illness stems from Laptop fever. It is the root cause of all disease. Stop the laptops from ever getting ill, and you will cure mankind. You with me? You not only want to survive but you want to be rid of pain, right? Follow me, but careful, remember I’m being persecuted by the medical boards and the government. They think I’m a quack because I know that you and your laptop can live forever.

            I need money like everyone else to survive. My colleague, a Lyme-literate doctor in Connecticut has received over one million dollars to fight the persecutions. I don’t need as much – we’re just talking laptop fever here, not “chronic Lyme disease” fever.

            If you want to get better, send a SASE to … and ssshh, don’t tell anyone. If you want me to help you, you can’t tell anyone. No one else will understand my madness protocol.

          2. @Kathy and vadaisy – HeHe! – But my computer and OS are pretty new (although our router might be a concern, hmmm). I suspect it’s a SBM issue, not that I’m complaining (or kinda defensive – :)), I appreciate the constraints of volunteer blogs.

            But, I’ve given up and am going to post a modified version of my comment down thread.

          3. whencarsfly says:

            I suggest you run a 3 week virus scan on your laptop and you’ll be virus free forever.

  25. whencarsfly says:

    My experience is that proper treatment does cure CHRONIC LYME DISEASE. There is no way to tell because there are no tests to adequately verify that the bacteria and co-infections have been eliminated. I choose life saving, evidence based medicine over theoretical “science based” medicine. What works is preferred over what is believed to work in this instance….

    1. Harriet Hall says:

      Your experience may be that “proper” treatment “appears” to cure a “disease” that you believe exists but that has not been proven to exist. Science-based medicine is not theoretical. It is based on good evidence, and it tries to distinguish good evidence from bad, something that is not easy, particularly for a layman. Personal experience, while very convincing to the person concerned, has been shown over and over to be unreliable. There isn’t a shred of evidence that the treatments offered by LLMDs save lives.

      1. whencarsfly says:

        Ok. I personally observed the symptoms of Chronic Lyme Disease improve in time with treatment by a competent and compassionate doctor well educated in the treatment of this complicated disease. The Chronic Borreliosis, Bartonella and Babesiosis were confirmed by the best blood test available and through clinic diagnosis by the said doctor.

        Where is your evidence that personal experience has been shown over and over to be unreliable? That is likely one of the most uninformed statements I’ve read on here today…humorous though. :)

        1. Nashira says:

          Are you really so unfamiliar with the low value of anecdotes on the evidence hierarchy? Good grief. A single random person’s purported observations do not overrule the determinations made by legit scientists based off legit science. Personal experience is no more king than I am.

          1. whencarsfly says:

            What is your standard for “legit” scientists and “legit “science”? Is it what you personally deem to be “legit”? If so, then perhaps you are the king.

          2. Camp Other says:

            You are correct, Nashira, in saying that anecdotes are low on the evidence hierarchy totem pole. I agree. At the same time, if a number of patients N where N is increasingly high who have clinical evidence of having been infected with Lyme disease self-report that they improve on additional antibiotic treatment (and treatment which may not match that which has already been used in clinical trials) is there any value in investigating these claims?

            Would it be of any value to conduct, say, a longitudinal study where independent researchers follow these patients, and with the patients’ and doctors’ consent, map their treatment plans out and follow their response using not only quality of life indicators but objective measurements?

          3. “is there any value in investigating these claims?”

            @Camp Other – Wrong question. “Is there *likely* value?” also “N is increasingly high” is vague to the point of being useless.

            “longitudinal study where independent researchers follow these patients, and with the patients’ and doctors’ consent, map their treatment plans out and follow their response using not only quality of life indicators but objective measurements?”

            Off the cuff I’d say there is likely little value. But like anything you would need to define it better. How many factors? What size of effect are you looking for? Are you looking for a 10% 20% or 30% increase in any one factor? Any group of three or more? What?

            Extracting meaning from that means that you would have to know something about the variability of the factors. Which is kind of hard since a lot of basic questions you can’t even ask. i.e. How much variability is there in CLD symptom X,Y,Z is meaningless if you don’t know if CLD exists.

            Perhaps if you did a case-control (with a significantly larger control) or a proper cohort study you might fare better.

          4. WilliamLawrenceUtridge says:

            At the same time, if a number of patients N where N is increasingly high who have clinical evidence of having been infected with Lyme disease self-report that they improve on additional antibiotic treatment (and treatment which may not match that which has already been used in clinical trials) is there any value in investigating these claims?

            Given the internet’s ability to self-select, share stories and build narratives, simply pointing to “N” patients is rather meaningless. Certainly clinical proof of previous infection would be helpful, but you’re still at a starting point. The problem is, there is an endless amount of goalpost-moving that can take place, such as when four clinical trials were conducted and all four were rejected because they didn’t have the desired results.

            Would it be of any value to conduct, say, a longitudinal study where independent researchers follow these patients, and with the patients’ and doctors’ consent, map their treatment plans out and follow their response using not only quality of life indicators but objective measurements?

            That’s not a terrible idea, LLMDs should focus on that instead of generating antibiotic-resistant bacteria.

      2. janetS says:

        Getting a chuckle out of arm-chair-scientist Harriet Hall, who feels she knows enough about CLD to suggest there is a ‘proper’ treatment. This is a very complex disease and, more often than not, involves more than the borrelia spirochete. There are many co-infections and, because the immune system is suppressed, many opportunistic infections involved.

        There is no absolute ‘proper’ treatment that we know of yet. Also, it is known that borrelia infections are chronic (exist in biofilms, as photographed using atomic force microscopy (AFM). By definition, bilfilm infections are chronic and it has been proven, SCIENTIFICALLY, that borrelia spirochetes form biofilms.

        1. WilliamLawrenceUtridge says:

          That’s a claim, but what is your evidence? If there’s not even a diagnostic test for CLD that is agreed upon by all, you can never tell if the patient is even infected. Also, as she often does, Dr. Hall doesn’t venture wild opinions – she cites consensus statements, review articles and related relevant sources. I’ll also note that she doesn’t actually suggest a treatment in this article, she merely points to the treatment suggestions raised (again) by experts.

        2. WilliamLawrenceUtridge says:

          Speaking scientifically, this highly speculative, 2012 article discusses Bb and biofilms…but never in the same sentence unless it’s flagged as speculation. Specifically, the concluding sentence of the section is “Sapi et al conclude that based on their in vitro demonstration, Bb likely forms biofilm in vivo and that Bb likely uses biofilm as a refuge from diverse environmental stresses within animal hosts.

          Is your evidence of in vivo biofilms more recent than 2012? Because both the 2012 article I’m reading, and the 2012 article it cites, specify in vitro only. Humans are not glass dishes.

  26. whencarsfly says:

    I’m sorry Harriet, do you have any direct experience with infection by a spirochete bacteria and co-infections?

    So when AIDS was first discovered then all evidence that was too be available was available or was there more to be discovered? The same question for another spirochete about which you may be familiar…that is historical, “evolved” scientific evidence.

    Please show me any valid scientific proof that contradicts evidence based outcomes of proper antibiotic treatment.

    I can show proof in my son that contradicts your evidence…now go back to the lab and avoid the woods so your fate remains unaffected by one of the bacteria you purport to know so well.

    1. WilliamLawrenceUtridge says:

      AIDS went from bizarre new syndrome to diagnosis to treatment in an extraordinarily short period of time. It was a real clinical entity, that could be tested for, confirmed and had a treatment that clearly improved survival. You can’t compare the two.

      Dr. Hall does not claim to “know the bacteria”, she defers to the actual experts, summarizing their points and making them readable to the layperson. Her point is, the actual experts on Lyme specifically (or, at least the ones who base their research and treatment on science rather than the adulation received from their patients) don’t find any good evidence for CLD to exist. If CLD exists, why can’t it be demonstrated by any lab giving the test? Why are the only labs that can detect it also the labs being investigated for incompetence and fraud?

      1. Melissa Bell (FALDA) says:

        The central difficulties in the diagnosis of Lyme Disease and determination of an appropriate treatment period stem from the lack of sufficiently sensitive and reliable biological markers of the disease. Without something as basic as markers for disease status, it is difficult to determine who has the disease, the effectiveness of a course of treatment, and the end point of treatment. Due to the undisputed difficulty in culturing the actual Lyme bacteria, Bb, from patients, current tests for Lyme rely upon an antibody response, which would not provide an answer to the question of whether live bacteria remain following standard antibiotic treatment.

        Many Lyme specialists prefer to have a Western Blot through the lab iGeneX (www.iGeneX.com) for three reasons: (1) iGeneX tests for multiple strains of Borrelia Burgdorferi (Bb), the bacteria that causes Lyme Disease (commercial labs such as Labcorp and Quest only test for a single strain of Bb); (2) IGeneX also considers additional highly relevant bands 31 and 34 (assuming you did not have the Lyme vaccine that was briefly on the market, these bands are highly probative); and (3) iGeneX reveals intensity for specific bands (not present, equivocal, low, medium and high).

        iGeneX has exceeded 98% on the past 9 years of proficiency ratings. There are no investigations for fraud or incompetence. IGeneX is in compliance with CMS (CLIA) and other State Health Agencies. To ensure that it maintains the standards of a “High Complexity Testing Laboratory” and is in compliance with National and State Health Agencies, IGeneX is inspected by the California Department of Health and New York State Department of Health on a regular basis, prior to renewal of licenses. The only issues (back in 2001) related to documentation, and a urine antigen test, not the tests relied upon LLMDs such as the Western Blot.

        Compared to iGeneX, that the CDC’s two-tiered testing scheme, that has been in place for decades, is far less reliable. Indeed, numerous peer reviewed studies have shown that the tests miss approximately 1/2 of actual cases. Although the tests were intended for surveillance purposes, doctors, the CDC, IDSA and insurance companies routinely use the tests for diagnostic purposes. China has recognized the fallibility of the CDC’s criteria, and only require 2 positive bands for a positive Western Blot, compared to the CDC’s 7.

        1. WilliamLawrenceUtridge says:

          Don’t you think then, in the absence of such a test, that leaping to conclusions about treatment are rather premature, indeed even dangerous? Rather than waving about macaque and mouse tests, don’t you think you should be advocating for the validation of such a test? Wouldn’t you say the use of long-term antibiotics, with the individual and societal risks such a course entails, in the absence of a well-validated means of confirming a diagnosis, constitutes malpractice? Particularly considering the vague and nonspecific nature of the symptoms found with chronic Lyme disease? In the presence of a bulls-eye rash, sure, that’s pretty much enough. But with fatigue, joint pain and mental confusion as the primary symptoms, wouldn’t you want something a little more, well, robust, before you put in a central line and fill it with potentially lethal chemicals?

          1. whencarsfly says:

            @William are you familiar at all with the other types of rashes presented by CLD and coinfections? Are you aware of the number of patients with Chronic Lyme Disease who never remember a rash and/or never had the “classic” bullseye rash?

            Go do your homework on all sides of the issue.

          2. Melissa Bell (FLDA) says:

            The CDC has known that it’s 2 tier surveillance test was fallible for decades. The CDC states that Lyme is a clinical diagnosis. Doctors routinely use clinical expertise to diagnose illness (we have seen this with our kid’s strep throat infections, diagnosis of bronchitis, etc.). Most LLMDs rely upon the existence of species specific positive bands on a Western Blot (even if the patient does not meet the CDC’s lofty surveillance criteria; note that China only requires 2 positive bands) in conjunction with a clinical diagnosis. How many more decades should suffering Lyme patients be forced to wait until the CDC develops a more reliable test?

            People are casting judgement re. anecdotes without being privy to all of the facts.

            Very few Lyme patients receive IV antibiotics.

            Whereas there are conceivably cases of medical malpractice with LLMDs, failure to properly diagnose Lyme Disease malpractice is far more prevalent. Contrary to your post, only about 1/2 of the people realize they were bit by a tick. Only about 1/2 develop a rash, many of which are not the classic bullseye rash, but rather atypical rashes. If a doctor fails to consider Lyme Disease as part of the differential diagnosis with a patient that (1) has exposure to ticks; and (2) a clinical presentation of Lyme Disease, including flu like symptoms, joint pain and fatigue, they have committed malpractice. Lyme Disease is far easier to treat if caught early, and the permanent damage can be substantial.

            Likewise, the CDC has known that it was vastly underreporting Lyme Disease cases for decades:

            Dr. Paul Mead, chief of epidemiology and surveillance for CDC’s Lyme Disease program, states that “scientists have known since the 1990s the number of cases was underreported by three- to 12-fold but did not have a good handle on exactly how greatly until now.” How many doctors, patients and parents were misled into thinking that Lyme Disease was “rare” with only 20-30 thousand cases nationwide annually, when the new estimate is now 300,000 cases per year?

            Dr. Philip Baker, president of the American Lyme Disease Foundation in Lyme (tightly affiliated with the IDSA), said he doesn’t think that the estimate is especially significant. “I wouldn’t make a whole lot out of it,” Baker said, “because we already know what you really need to know, which is that there’s a lot of Lyme disease.” This dismissive attitude is unacceptable. The failure to accurately track Lyme Disease numbers has led to far less funding, awareness and urgency to develop better testing and treatment for this epidemic. Of course it matters.

            It seems rather coincidental that the CDC chose to ignore the vast underreporting problem for decades, but then announced the much higher numbers shortly before a new Lyme Disease vaccine is scheduled to hit the market. Indeed, just last week it was announced that the new Lyme vaccine was on the horizon. http://www.healthline.com/health-news/children-universal-lyme-disease-vaccine-on-the-horizon-081213

          3. vadaisy says:

            whencarsfly: @William are you familiar at all with the other types of rashes presented by CLD and coinfections? Are you aware of the number of patients with Chronic Lyme Disease who never remember a rash and/or never had the “classic” bullseye rash?

            Go do your homework on all sides of the issue.

            You completely missed WLU’s point. The bull’s eye EM rash is the only clinically and visually definitive rash associated with Lyme disease. Other rash presentations are indeed vague and nonspecific and could easily be from other causes. Vague symptoms are not necessarily evidence of a specific infection.

          4. whencarsfly says:

            @vadaisy: When you said, “You completely missed WLU’s point.”, you are making an assumption. The fact is that I understood the point he was attempting to make.

          5. WilliamLawrenceUtridge says:

            you are making an assumption. The fact is that I understood the point he was attempting to make.

            No, actually, you quite missed it but I’ll restate. There’s no accepted test for Chronic Lyme Disease. In the absence of any meaningful test to indicate a vague set of symptoms is actually due to the active presence of a dividing Bb bacteria, putting in a central line and filling it with antibiotics is irrational, dangerous and unwarranted. The point is – you are attributing the symptoms to Bb, but you have no proof that this is the case. By hyperfocusing on the single sentence that mentions the bulls-eye rash, you quite missed what I was conveying.

            This post is redundant, since vadaisy has already made it in a single sentence (and you missed apparently twice).

            @Melissa Bell

            How many more decades should suffering Lyme patients be forced to wait until the CDC develops a more reliable test?

            How many people should waste their time, money, and sometimes lives, on a hypothesis that has not been proven? LLMDs and CLD advocates still have not met the burden of proof required to demonstrate that the vague symptoms associated with CLD are in fact due to an active infection by Bb or sequelae of previous Lyme disease. Don’t bother trying to convince me – go convince the scientists, and I’ll change my mind. Pointing to the difficulties with the tests only demonstrates that the tests are imperfect. That’s not the same thing as demonstrating that your proposed etiology is correct.

      2. whencarsfly says:

        @William when you say, “at least the ones who base their research and treatment on science”, I’d frame that a little differently by saying, “at least the ones who base their research and treatment on the science that supports their agenda” for clarity.

        1. WilliamLawrenceUtridge says:

          I’d frame that a little differently by saying, “at least the ones who base their research and treatment on the science that supports their agenda” for clarity.

          Yes, but you’re imputing an agenda merely because you disagree with their conclusions. It’s not their fault the support for your hypothesis has been found lacking numerous times, by many different scholars and bodies. You can claim that your evidence is dismissed due to prejudice, but that may not be the case – and in fact I don’t think it is the case. And you certainly aren’t winning friends and allies within the medical community by attempting to force your preferences through threats and legal actions.

          People keep claiming “agenda” rather than seeing “evidence” (specifically, the lack thereof).

      3. whencarsfly says:

        Do you have any idea what drove AIDS to the forefront so quickly. Go do your homework and get back with me, it’s not my place to educate you on this and I don’t have patience for a conversation with you until you know the full history. It is very relevant to this discussion but i won’t be the won’t to reveal the reason for that; let your education be through personal research.

        1. WilliamLawrenceUtridge says:

          Do you have any idea what drove AIDS to the forefront so quickly. Go do your homework and get back with me, it’s not my place to educate you on this and I don’t have patience for a conversation with you until you know the full history. It is very relevant to this discussion but i won’t be the won’t to reveal the reason for that; let your education be through personal research.

          A large number of unusual but objectively verifiable infections and death.

      4. Camp Other says:

        WilliamLawrenceUtridge says:

        “Dr. Hall does not claim to “know the bacteria”, she defers to the actual experts, summarizing their points and making them readable to the layperson. Her point is, the actual experts on Lyme specifically (or, at least the ones who base their research and treatment on science rather than the adulation received from their patients) don’t find any good evidence for CLD to exist.”

        How does one determine which experts to listen to, and which ones to set aside? Does one listen to the academic physicians on the IDSA Lyme disease panel alone – or does one also look at the huge body of scientific literature out there which discuss Lyme disease microbiology, immunology, and pharmacokinetics?

        ” If CLD exists, why can’t it be demonstrated by any lab giving the test?”

        Lyme disease can be detected by PCR in early infection, best within the first two weeks within infection. After that, Borrelia burgdorferi has a tendency to leave the bloodstream and go into the ECM, gravitate towards collagen-rich tissues. The CSF and synovial fluid have the same problem. So while PCR is the gold standard for determining the presence of infection for many diseases, in Lyme disease, there are technical challenges.

        To determine if post-antibiotic treated animals are still infected, a post mortem biopsy collection is done. One can PCR, amplify these samples and find out what the genospecies of Borrelia is, but this is still only evidence of the presence of bacterial DNA – it is not conclusive of whether the bacteria is metabolically active and infectious. Both of these conditions have to be confirmed in order to make the claim that infection is still present; presence of bacterial DNA is not enough.

        Right now science is at a state where spirochetes have been transferred from a post-antibiotic treated animal to an uninfected host via ticks, but the spirochetes found in the new host are non-cultivable.

        Citing Dr. Stephen Barthold in his own words from http://ccm.ucdavis.edu/profiles/barthold.html

        “Antibiotic Tolerance of Borrelia burgdorferi

        The mouse model has been used to prove that persistence of B. burgdorferi is the rule, rather the norm, for this infection, which has also been shown with numerous other animal models. This fact poses a challenge to antibiotic therapy for Lyme disease, as antibiotics act by eliminating the majority of microbes, but require the host to “mop up” the remainder. This approach works for conventional bacteria, but B. burgdorferi’s persistent behavior may preclude this approach. With this in mind, the mouse model has been used to show that following antibiotic treatment, mice remain infected with slowly dividing but genetically intact spirochetes which can be acquired and transmitted by ticks to other mice, or by allograft transmission from treated mice to naïve recipients. Ongoing studies are investigating if these “persisters” revert to fully pathogenic, dividing forms or die out. The model is being used to test efficacy of new antimicrobial drugs and alternate treatment regimens with the goal of optimizing treatment of humans and animals with Lyme disease.”

        There are culture tests available in research labs, but these are proprietary and only used for research purposes; they are not being used by commercial labs. In clinical practice, family doctors and infectious disease specialists generally use serological tests and assays which are done on a mass basis at a commercial lab and have a quick turnaround time. Usually a test which detects the presence of antibodies to Lyme disease is all any doctor needs, anyway. A culture test – if one has access to one – can leave one waiting for 5 weeks to get a positive result because Borrelia burgdorferi divides so slowly. There are media which can accelerate the process to a degree, but even then it is still so much slower than an ELISA or even a Western Blot.

        ” Why are the only labs that can detect it also the labs being investigated for incompetence and fraud?”

        That is an entirely different question, but given my response above, I can say that any labs being investigated for incompetence and fraud are not the only labs out there. I don’t know what the allegations are, and those investigating these situations are privy to the facts of the investigation; all I can get is hearsay and whatever happens to make it online in terms of court ordered documentation made public.

        Either way, there are labs out there which can culture Borrelia burgdorferi. The issue is that one can’t find it as easily in either living animals or humans – post-mortem studies and invasive biopsies are your best bet, but naturally this would be a problem for people.

        1. Camp Other says:

          Sorry, WilliamLawrenceUtridge, a correction to the above statement of mine:

          “Right now science is at a state where spirochetes have been transferred from a post-antibiotic treated animal to an uninfected host via ticks, but the spirochetes found in the new host are non-cultivable.”

          Should have read:

          “Right now science is at a state where spirochetes have been transferred from a post-antibiotic treated animal to an uninfected host via ticks, but the spirochetes found in the new host HAVE BEEN non-cultivable IN SOME STUDIES BUT NOT OTHERS.”

          Apologies, this is the second error I’ve made today. Clearly, I need coffee or sleep – one or the other.

          1. Camp Other says:

            Oh screw it, I was actually right the first time.

            You know what the problem is? The evidence of finding spirochetes which are SLOWLY-DIVIDING yet non-cultivable.

            Okay. I’m going to shut up now and take a break. But I’ll come back to check on comments later.

        2. WilliamLawrenceUtridge says:

          How does one determine which experts to listen to, and which ones to set aside? Does one listen to the academic physicians on the IDSA Lyme disease panel alone – or does one also look at the huge body of scientific literature out there which discuss Lyme disease microbiology, immunology, and pharmacokinetics?

          In this case, one might ask why the academic physicians on the ISDA Lyme disease panel found the huge body of scientific literature out there discussing Lyme disease microbiology, immunology and pharmacokinetics unconvincing. Twice.

  27. mcrislip says:

    As an ID doc who lives in a mostly Lyme free area, I have not found the literature quoted by the ILADS folks as impressive as the IDSA literature. The ILADS papers in favor of chronic Lyme are generally a log or two worse quality and not convincing. Years ago there was a ‘debate’ at IDSA where the head of ILADS gave a talk in favor of chronic Lyme followed by the opposing view from ?IDSA. I was not and remain not impressed, especially when you read the entire literature of lyme.

    Patients do get better on antibiotics, whether they get better because of antibiotics can be a difficult question when the diagnosis is uncertain or imaginary. One of the classic mistakes all doctors make in ID is Response implies diagnosis and the hardest to ignore. http://www.sciencebasedmedicine.org/a-medical-skeptical-classic/

    I remember a patient who had photomicrograph from a Lyme lab with an arrow pointing at a Babesia. It was an obvious platelet clump, looking nothing like Babesia. I was not impressed with the rigor of the lab.

    I do wonder about post infectious fatigue states in some patients. Something does happen to some people after the infection is gone, some dysregulation, although I find the literature murky (http://www.ncbi.nlm.nih.gov/pubmed/21964398), but I do find the histories consistent. Nothing do about it unfortunately

    1. you live somewhere that ticks do not live???
      how interesting!!!
      you are really lucky :-)
      you are a MD? do you specialize in Zoonotic Pathogens?
      Vector Borne Diseases? Bioterrorism weapons?

      1. windriven says:

        “you live somewhere that ticks do not live???

        Dr. Crislip did not say that. You can read can’t you?

        “you are a MD? do you specialize in Zoonotic Pathogens?
        Vector Borne Diseases? Bioterrorism weapons?”

        Yes. Dr. Crislip is an MD. Are you? He is an infectious disease specialist. Are you? As such he is a specialist in communicable diseases.

        Are you a specialist in vector-borne diseases or are you simply a vector for the transmission of silliness?

      2. WilliamLawrenceUtridge says:

        Lyme is a bioterrorism weapon?

        1. vadaisy says:

          @WLU,

          Jesse Ventura, as seen on TruTV’s Germs Gone Wild, as well as others do seem to believe that “Chronic Lyme” is a biological warfare agent released by the government from Plum Island.

          1. vadaisy says:

            If you believe that video, I might be able to find you a gorgeous block of high alpine mountain land for sale in Florida for a mere $100 million US dollars.

  28. lilady says:

    I worked as a public health nurse-epidemiologist at a County health department. I did case surveillance and reporting of confirmed cases of Lyme disease to the CDC I remember how the LLMDs and their “chronic Lyme disease patients” convinced local, State and Federal legislators to conduct “hearings” about “chronic Lyme disease”.

    I remember how Connecticut State Attorney General Richard Blumenthal (now Senator Blumenthal), misused his office by suing the IDSA (Infectious Diseases Society of America) and their existing Lyme disease Diagnostic and Treatment Guidelines at the instigation of those LLMDs and their “chronic Lyme disease” patients. Blumenthal actually alleged that the IDSA had colluded with insurance companies and the CDC to deny those patients long term IV antibiotics.

    An agreement was reached between Blumenthal and the IDSA to have doctors from a wide variety of specialties review the hundreds of studies submitted by plaintiffs and defendants.

    Guess what. The IDSA existing Guidelines were found to be the gold standard, for diagnostic criteria and for treatment.

    http://www.idsociety.org/Lyme_Review_Panel_News_Release/

    1. vadaisy says:

      New York State Congressman Chris Gibson approves of “LLMDs” conducting medical “experiments” on patients outside of clinical trials. Listen to him on the local news.

      Human medical experimentation should remain illegal outside of controlled clinical trials and designated and approved research organizations with strict control measures in place. There is no need to reinvent the wheel here. It is well-known that the treatments by “Lyme-literate” practitioners do not work and many appear quite dubious. These doctor protection bills are not in the best interest of patients. Do not allow them to pass. Rep. Gibson should be ashamed of himself – allowing mass human experimentation… Shame, shame, shame.

    2. Melissa Bell (FALDA) says:

      Without question, the investigation revealed undisclosed financial conflicts of interest. Moreover, the dated guidelines rely upon 4 studies to support the contention that long term antibiotics are allegedly not effective in treating chronic Lyme Disease (or PTLDS). These four studies have been called into question by Allison DeLong, a biostatistician at Brown University’s Center for Statistical Sciences and lead author of the study published online Aug. 19, 2012, in Contemporary Clinical Trials. DeLong concluded that the four studies fail to prove that retreatment does not work. That questionable interpretation, however, has led doctors to forgo treatment and insurance companies to withhold reimbursement.

      “The goal of the paper is to clarify what was actually found from these clinical trials and what could be said and what couldn’t be said,” DeLong said. “A lack of evidence should not be used to deny treatment when the studies have serious flaws.”

      Evidence in the trials is most often inconclusive, she and three co-authors found. Two studies even found some statistically significant benefits from antibiotics.

      In 2009 and 2010, DeLong and her colleagues decided to look into the matter with full statistical rigor. Their analysis started by scanning the medical literature for any randomized clinical trials offering evidence of the efficacy of antibiotic retreatment for Lyme disease. Careful review of more than 100 studies ultimately whittled the field down to the four studies on which the Infectious Diseases Society of America and the American Academy of Neurology are based their guidelines.

      The most influential studies were conducted by Klempner et al., and published together in the New England Journal of Medicine in 2001. The multicenter trials enrolled chronic Lyme sufferers with positive or negative blood serum results for Immunoglobulin G, an antibody that might indicate active infection. In each of the IgG positive and negative groups, patients either received IV antibiotics followed by oral antibiotics or IV placebo followed by oral placebo. Their symptoms were measured along the way using a subjective set of health quality-of-life measures called the SF-36.

      Although Klempner et al. found no significant benefit to retreatment, findings from subsequent SF-36 studies in chronic illnesses provide evidence that the Klempner study was looking for unrealistically large differences.

      “The trials, as designed, called for treatment effects considerably larger than the minimum clinically important differences (MCID) identified in other chronic illnesses, suggesting that the sample sizes were inadequate and the trials were very likely underpowered to detect the true underlying MCIDs,” DeLong and her co-authors wrote in the journal.

      Klempner’s statistics showed that treatment might or might not have been effective given the broad range of a statistical measure known as the confidence interval, DeLong said.

      In another of the four trials conducted by Krupp et al., researchers found that retreatment produced a significant benefit for fatigue, but the authors of the study mistakenly discounted that result, DeLong said.

      The authors became concerned that their results were tainted by too many subjects realizing that they were receiving real treatment instead of the placebo. The measure of fatigue is subjective and could be influenced by that realization. But DeLong found that the subjects weren’t likely to have realized anything. Here’s why: If the members of each group have a blindly optimistic seven in 10 chance of believing that they received real medicine, then the people who really were would be right seven out of 10 times and the people receiving the placebo would only be right 3 out of 10 times. The people receiving the medicine would seem like they had discovered their status, but in reality they were only making a lucky, optimistic guess.

      While the Krupp study was adequately powered to measure a significant benefit from fatigue, it had less power to measure the two other treatment effects it considered: improvements in cognitive processing and clearance of a potential Lyme disease biomarker, DeLong said.

      The last of the four studies, by Fallon et al., had a very small sample size. It found hints of some benefits from retreatment but nothing definitive either positively or negatively.

      Ultimately, DeLong said, the best evidence to support or refute antibiotic retreatment will come when scientists develop a definitive test for active Lyme disease infection. In the interim, it is possible that chronic Lyme disease patients harbor an ongoing infection that antibiotics could treat.

      “The interpretation of the trials goes too far,” she said. “You can’t say it’s been shown that retreatment is not beneficial. You can’t then jump to the conclusion that this shows there is no persistence of infection.”

      In addition to DeLong, the paper’s other authors are statistics graduate student Barbara Blossom of Colorado State University (Brown A.B., 1993), Dr. Elizabeth Maloney of Wyoming, Minn., and Dr. Steven Phillips of Greenwich Hospital in Connecticut.

      1. Nashira says:

        You cannot just wave your hand and list post-tx Lyme disease syndrome as though it were a synonym for ‘Chronic Lyme Disease’. PTLDS treatment does not require brobdingnagian doses and courses of IV antibiotics as you espouse.

        Conflating the two serves only to de-legitimize PTLDS. It does not legitimize CLD.

      2. vadaisy says:

        You are grossly inflating the very minor findings of the review of the IDSA guidelines. Many of those minor findings were merely grammatical in nature. One example of a requested update to change the word “might” to “should”. I understand you are simply repeating the false rhetoric bellowed out by the Lyme disease associations, but all the bellowing in the world will not change the actual facts.

        1. Camp Other says:

          vadaisy said:

          “You are grossly inflating the very minor findings of the review of the IDSA guidelines. Many of those minor findings were merely grammatical in nature. One example of a requested update to change the word “might” to “should”.

          Actually, the review panel’s proposed changes were not just about “might” to “should”, and even those words are not “merely grammatical” but change the meaning of a recommendation from the need for potential treatment or examination/investigation to something closer to a requirement.

          When one is writing a grant proposal, one has to state if one’s project “will” meet a specific objective versus “may” meet a specific objective; the language is used in a very particular way in order to not overstate the objectives and goals to be met for that project. “Will” statements entail follow-through; “may” statements are about the icing on the cake one hopes to add on or will be discovered in the process of meeting the main or top objectives which are required.

          I’ve summarized the proposed 2009 review panel changes to the IDSA 2006 Lyme disease guidelines here, on my web site: http://campother.blogspot.com/2013/03/2009-final-reports-proposed-changes-to.html

          In examining them, in some cases it appears that the effectiveness of some treatments were originally overstated and that there was a lack of clarity for distinguishing between more serious, neurological cases from those without neurological involvement – cases which require more intense treatment. There’s more; it’s not just a matter of choice of words – it is meaning also.

          I recommend that everyone find the original 2009 report and read that, and see what it says as well.

          1. vadaisy says:

            @CampOther, unlike yourself, I am not qualified to offer an expert review of the findings of the Infectious Disease Society of America’s official opinion on the diagnosis and treatment of Lyme or any other infectious disease. I will defer to their opinion and trust the CDC and other experts. It does appear that you are of the opinion that there is no PTLDS, only a chronic and persistent infection.

            Kindly explain more in response to the subject of this post. Do you agree with all of the treatments mentioned in the Huffington Post story? Why aren’t any of the supporters of CLD answering the questions about NAET and chelation? How does NAET kill off a spirochete? Is it supposed to be like RIFE, but from human energy? How do you know when the disease has been adequately treated and what does the difference in the energy fields feel like? Educate me.

      3. WilliamLawrenceUtridge says:

        “The goal of the paper is to clarify what was actually found from these clinical trials and what could be said and what couldn’t be said,” DeLong said. “A lack of evidence should not be used to deny treatment when the studies have serious flaws. [snip] The trials, as designed, called for treatment effects considerably larger than the minimum clinically important differences (MCID) identified in other chronic illnesses, suggesting that the sample sizes were inadequate and the trials were very likely underpowered to detect the true underlying MCIDs [snip] researchers found that retreatment produced a significant benefit for fatigue, but the authors of the study mistakenly discounted that result, [snip] It found hints of some benefits from retreatment but nothing definitive either positively or negatively.

        I believe the quotes come from this article. From this set of quotes, it looks like it could be summarized as “the treatment, if it is effective at all since the results are not statistically significant and thus unlikely to be clinically significant, relieves only one symptom, fatigue, which is so vague and liable that it’s not specific for anything, and we found this out by undertaking some statistical fishing.” It certainly sounds like nothing definitive has been identified yet; in circumstances like these, the best response is to identify new hypotheses based on the most promising lines of evidence, then undertake new research. Research should be iterative, not subterranean; it should improve and converge over time, it should not dredge. This paper is possibly a reason to undertake further research for clarification, it is not a slam-dunk vindication of the CLD hypothesis.

      4. whencarsfly says:

        @Melissa – Beyond the entertainment value gained by a *cough cough* intellectually stimulating debate with these guys, commenting on this article is a waste of valuable time. Time would be best spent enjoying time with our children as their health continues to improve.

        1. Melissa Bell (FLDA) says:

          Absolutely. They claim to be science based, but only consider the science that supports their beliefs. Typical IDSA rhetoric.

  29. OliversArmy says:

    My ND, Dr. H. N. Schmilsson, cured my chronic tic-borne illness by prescribing a daily dose of coconut water.

    That’s right. She cured my Lyme with the coconut, I drank it all up.

    Side effects may include unrelieved belly-ache.

    1. nancy brownlee says:

      I love you, OliversArmy.

      1. windriven says:

        You love a guy who sniffs his own flatulence and calls it nirvana? Have you heard of regression to the mean? Or shall we pass around a six pack of coconut water and rid the earth of the pox of Lyme? You can’t really be that stupid can you?

        1. Woo Fighter says:

          I hope you realize OliversArmy post was a very clever joke referring to the Harry Nilsson song “Coconut”?

          https://www.youtube.com/watch?v=Tbgv8PkO9eo

          As a huge Elvis Costello fan I love your ‘nym too, Olver!

        2. OliversArmy says:

          To be fair, I only call my flatulence nirvana because it smells like Teen Spirit.

    2. elburto says:

      Ain’t there nothing you can take to relieve that bellyache?

    3. Kathy says:

      Cure Lyme with coconut! Delicious!

  30. TBruce says:

    After trying to foist those papers by “Morgellons-literate” Strickler on us, you haven’t got a great deal of credibility promoting the feeble conclusions made by DeLong et al.

    1. Melissa Bell (FALDA) says:

      ALDF = IDSA. Yawn.

      It is undisputed that it is difficult to culture Bb (hence why lab testing seeks an antibody response). So why are these fallible tests then used to “prove” that there is no persistent infection after antibiotic treatment.

      The Embers groundbreaking study funded by National Institutes of Health (NIH) (2012) provides conclusive evidence that the conventional treatment of one month of antibiotics is ineffective at killing off the Lyme bacteria in monkeys who had been infected with Lyme 4 months earlier. A substantial percentage of the monkeys did show irradiation of infection with a longer treatment course. Posters here insist on repeating the standard and close-minded ideology of IDSA doctors. I encourage you to read and explain the results of the Embers study and the growing body of evidence that contradicts the standard IDSA view.

      http://www.plosone.org/article/info:doi/10.1371/journal.pone.0029914

      Considering (1) the CDC now concedes that its surveillance program misses 90% of actual cases; and (2) the substantial peer reviewed research showing that the CDC/IDSA two tiered testing scheme misses about 1/2 of actual cases, doctors can no longer hide behind the shield of the CDC to avoid liability for failure to timely diagnose Lyme Disease based upon clinical presentation (indeed, this is precisely what the CDC recommends).

      1. Kathy says:

        Melissa starts both her latest postings so:

        31-2 “Without question,…”
        34-1 “It is undisputed that …”

        Er, no, Melissa.

        1. Melissa Bell (FALDA) says:

          Well reasoned argument Kathy. Perhaps you should do your homework before making such ridiculous claims.

          31-2 The investigation by Blumenthal DID in fact show financial conflicts of interest. Indeed, Blumenthal’s findings included the following:

          The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;
          Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;
          The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA’s oversight committee;
          The IDSA’s 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group’s position on chronic Lyme disease to achieve “consensus”;
          The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;
          The IDSA portrayed another medical association’s Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.

          http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

          You may disagree with the findings, but these were the findings.

          34-1 – Please direct me to a sensitive, specific test for the actual Lyme bacteria (not merely an antibody response). This would be a Godsend to the Lyme community.

          1. Kathy says:

            ‘Fraid you’ve missed my point Melissa. Try again.

          2. “Please direct me to a sensitive, specific test for the actual Lyme bacteria (not merely an antibody response). This would be a Godsend to the Lyme community.”

            This is a bizzaro-world comment. Are you claiming that no test exists for some type of bacteria? If so, how do you think sensitivity and specificity values for the available tests are calculated? If no test exists how would one even confirm that some type of bacteria actually causes some particular disease?

            If a test exists and is used to calculate the sensitivity/specificity of a proxy. Why do you care about what the proxy is? If you could determine the presence of a particular bacterium (to some level of sensitivity/specificity) by the number of times someone blows their nose in a 5 min period. It would be no different than the probability adjusted “direct” test.

            Perhaps you are trying to say that the level of sensitivity or specificity is inadequate in the tests that are currently available. If so you should be clearer about what level you would consider useful.

      2. WilliamLawrenceUtridge says:

        You may yawn, but that doesn’t refute their points.

        I encourage you to read and explain the results of the Embers study and the growing body of evidence that contradicts the standard IDSA view.

        Well, one could start with noting that humans aren’t macaques. But also, the article seemed to indicate that there were indeed objective ways to assess the presence of Borrelia burgdorferi – unlike sufferers of CLD.

        You also note below the presence of conflicts of interest. Conflicts of interest require extra scrutiny of claims and supporting documentation, it is not an invalidation of all of arguments made by the person with the COI. You seem to think a COI is synonymous with “fraud”; it’s not. You don’t get to dismiss an entire scientific panel because some, or even all of them, may have a COI. Also note that a strong emotional attachment to an idea is a non-financial conflict of interest. People are motivated by more than just money.

      3. The difference being is that ADLF actually made a compelling case. You don’t.

        Delong, et al appears to have cherry picked their analysis tools.

        But hey, if you can’t understand the science…just keep talking about…whatever it is you were talking about.

    2. vadaisy says:

      Thank you for participating in this discussion, TBruce. Please keep writing. This “chronic” Lyme disease, chronic “Morgellons”, and chronic “multiple infectious disease” paranoia has become out of control and exaggerated by the media outlets. I’m surprised none of them have mentioned the chronic “Karma” and chronic “energy fields” invading our lives, which is another pseudo-diagnosis perpetuated by leading “Lyme-literate” physicians.

      1. vadaisy says:

        I stand corrected. Chronic energy field invasions have indeed been mentioned today on Mercola as one cause of “chronic Lyme”.

        I get dibbs on chronic charlatans being the cause of Daisy Fever.

  31. windriven says:

    Ho Hum. Another n=1 anecdote. Read the title of the blog, then bugger off.

  32. karen says:

    There are many of Lyme patients including myself and that also have neurological problems. Do not think you would have this sarcastic opinion of Lyme patients if you had to endure half of what we deal with on a daily basis! You sure could use a bit of education on this subject or better yet, spend some time with a Lyme positive patient, you just might learn something useful.

  33. Whencarsfly says:

    So, do any of people here who believe there is no CLD have any personal experience with Lyme Disease?

    1. ab says:

      I don’t have personal experience with morgellons disease either, but I know it does not exist. Personal experience and bias are the absolute worst things you can insert into critical and science based thinking. I’m sorry you can’t grasp that concept.

      1. elburto says:

        Hear hear!

        Morgellons and CLD inhabit that same zone in the woo-o-sphere that insists that all doctors are part of some evil conspiracy, and are solely interested in money.

        Except, that is, for those doctors that pander to patients’ illness beliefs and charge them thousands for the “privilege”. Those doctors are good and kind, and “lifesaving”, even though they push dangerous “treatments”, have been censured by professional organisations, and are profiting from enabling the beliefs of their patients.

    2. Carl says:

      Personal Experience Doctrine, The:

      The belief that, prior to the year 1969, Neil Armstrong was no more likely to walk on the moon than Jimmy Page.
      Though the doctrine’s original assertion is now antiquated, signers of the doctrine have continued to restate their belief in terms of more modern events by stating them in decentralized locations such as blog comments, forum posts, and social media.

  34. Vicki says:

    karen@36:

    Nobody is claiming that you don’t have neurological problems.

    What this blog post is saying is that those problems have been misdiagnosed: whatever is causing them, it isn’t a chronic infection with the Lyme disease bacterium.

    The thing about a misdiagnosis is that it may divert you (and your doctor) from finding the actual cause of your symptoms. Long-term antibiotic use has risks; that means that this misdiagnosis isn’t just wasting your time and money, it may increase your risk of infection.

  35. I have seen large numbers of people who have never left Portland Oregon, never been in the woods, never had an exposure, never had a syndrome compatible with Lyme in its many stages, had negative ELISA and Western blot, but had a positive lyme test from a sketchy lab by their naturopath for their fatigue, who then received extensive iv and po antibiotics and other therapies for CLD and were not a lick better at the end but were substantially poorer. Does that count?

    I have also diagnosed and treated, thanks to travel, Lyme from Europe and the NE, all with classic forms of the disease. And they were all cured with no long term symptoms.

    1. elburto says:

      I know someone who’s from an industrial city in the North of England, barely a tree in sight let alone a forest full of deer, who has been dx’ed with CLD.

    2. latenac says:

      I know someone in Oregon who was being gently pushed into a Lyme diagnosis when she sought a 2nd opinion and it turned out to be anal cancer. It led me to write to my VT legislators to vote no on a bill that will probably come up next session legislating treatment and definition of Lyme disease. The sad thing is one of them wrote me back saying it was the only sane, science based comment he’d received on it.

  36. Pareidolius says:

    I work with someone being treated for CLD. She clearly suffers from something. Joint pain. Lethargy. Depression. She’s on tons of herbs and the antibiotics. She feels like crap a good deal of the time and sometimes she tells me that the antibiotics are hell on her (she goes on and off of them, but she swears they’re helping her). Her western blots were all negative and it was only the ingenX test that “proved” she had Lyme. Oddly, she seemed really happy when she got the diagnosis that she believed was correct. Maybe she felt vindicated. She’s a wonderful person and I truly care about her and tried to give the SBM view but there is no going against her LLMDs so I can’t convince her that this terribly expensive treatment could be harmful to her. It’s an awful situation and hard to watch. So yes, I do know someone in the throes of this syndrome and the LLMDs aren’t helping her get better, just helping themselves to thousands of her dollars.

    1. Melissa Bell (FALDA) says:

      Perhaps you should just be a supportive, non-judgmental friend, or otherwise simply mind your own business. How do you know she is not getting better? It typically takes a couple years to recover from late state Lyme and co-infections.

      iGeneX, which has exceeded 98% on the past 9 years of proficiency ratings. In comparison, numerous peer reviewed studies have concluded that the CDC’s surveillance criteria (that doctors mistakenly often use to “rule out” Lyme”) misses approximately 1/2 of actual cases. This is part of the surveillance program that the CDC now concedes misses at least 90% of actual cases. Did you know that the current test for Lyme Disease via labs you would approve only test for a single strain of the Lyme bacteria when there are many that have been shown to infect humans? A bill was passed in Virginia which requires doctors to tell patients a negative result does not mean you do not have Lyme Disease. We would love for more accurate tests to be developed, both for diagnosis, as well as to determine when an infection has in fact been eradicated.

      The discussion here also ignores the fact that the sicker Lyme patients virtually all have other infections, that make recovery from Lyme Disease more difficult. There are many diseases (some life-threatening) carried by ticks that can complicate tick-borne disease diagnosis, treatment and recovery, including, but not limited to Babesia, Tularemia, Anaplasma, Mycoplasma, Ehrlichia, Rocky Mountain Spotted Fever and Bartonella.

      1. vadaisy says:

        @Melissa – Explain how someone can have untreated and chronic Rocky Mountain Spotted Fever, chronic Borreliosis, chronic Ehrlichiosis and chronic Babesiosis, and live for two to twenty years to tell about it?

        1. whencarsfly says:

          Perhaps you can explain it @vadaisy (hint: look at another spirochete, syphilis and see how it is possible to survive for years after infection).

          If you do a good job you could turn it in for your next assignment in school. Guaranteed extra points for using SBM to support your conclusion of a psychological based solution.

          Good luck!

          1. vadaisy says:

            Rocky Mountain Spotted Fever is fatal if left completely untreated. One does not survive with so-called “chronic” RMSF for twenty years.

            Syphilis is easily diagnosed and evident with proper laboratory testing. It is not a mysterious stealth organism that can not be detected by anyone except a Syphilis-literate doctor and Syphilis-literate testing laboratory, as is the case with the “chronic Lyme disease” doctors and their specialty testing labs. Furthermore, Syphilis is easily treated with cheap antibiotics, not a lifetime of expensive intravenous antibiotics which are likely purchased from a “Lyme-literate” home infusion company (perhaps based in Florida), along with hoards of supplements of unknown origin, efficacy, and potency,

      2. WilliamLawrenceUtridge says:

        If my family or friends forwards me one of those “THEY have a cure for cancer and THEY don’t want you to know about it” e-mails, I call them on it. I challenge their claims, and point out the logical absurdities, lack of evidence and flat-out crazy involved in such claims. If I saw a friend who was about to buy a horrible used car with obvious flaws, or marry a blatantly abusive person, I would talk to them about it.

        Friendship doesn’t mean “you have a free pass to endanger yourself, you have my complete support for doing so”. Not in my book.

      3. Pareidolius says:

        You have no idea what kind of friend I am. I can see when she’s up and able to work, and when she’s on the couch in the break room in agony. I am supportive of her in every way I can be. We don’t discuss her treatment regime as a going concern, I just know that she tells me when she’s feeling up and when she’s feeling down.
        What I don’t get is why the conspiracy against CLD would exist. I’m not a scientist, but I do practice critical thinking to the best of my abilities and there is no good reason for there to be a conspriacy? Big Bad ol’ Pharma would be the big winner if CLD were real. Non LLMDs would rake in the bucks. It makes zero sense. What are your theories?

    2. WilliamLawrenceUtridge says:

      Why on earth would she go on and off antibiotics? To ensure that if it is a genuine Lyme case, that she can never have it effectively treated?

      1. Nashira says:

        The folks I’ve met, who claim CLD, will go on and off because they can’t bear the side effects of the abx and the IV site. It is a very nice way to breed resistant bacteria. *sigh*

      2. vadaisy says:

        It is called “pulsing” the antibiotics. The “LLMDs” instruct patients to pulse the antibiotics else the Lyme disease bacteria will grow resistant to the treatment. So they use many different antibiotics and keep starting and stopping treatment often.

        1. WilliamLawrenceUtridge says:

          …are they stupid? They’re giving their patients instructions on how to ensure their bodies are filled with multi-drug resistant bacteria. It’s so hard not to hope that one of these LLMD get infected with one of the drug-resistant bacteria their patients are so patiently culturing.

  37. looneylymie says:

    I was bitten and had a subsequent bull’s eye rash. I was given the “proper care” that the “adequate” CDC guidelines allowed and went on my merry way believing I was cured! At that time I was in perfect health. I did not take a SINGLE medication! My health began to deteriorate subsequently and rapidly and I developed a number of odd, unrelated (I thought) symptoms. I live in the South and infectious ticks don’t cross the state line to get down here. It took me 2 years to get a diagnosis of what was wrong with me and I had to leave the South to get it! You call the ILADS doctors and treatment guidelines quackery. I got ZERO help from the doctors I saw or tried to see, including 3 Infectious Diseases doctors, one of whom refused me even a consult, saying I had “already been treated”. I would like to know what YOU have to offer me to relieve my intense pain and other suffering that my “proper treatment” did not cure? You are denigrating (or worse) treatment that DOES help but you yourself offer NOTHING but a psychiatrist to help those of us caught in this medically incorrect disease. You also want to remove the license of the doctor who does help me so others such as myself would have no options!!! “Physician, do no harm!” Hrmph! You and your pious ilk have done me MUCH harm!

    1. davdoodles says:

      “I was given the “proper care” that the “adequate” CDC guidelines allowed and went on my merry way believing I was cured! At that time I was in perfect health.”

      Big win for science, and you.

      Then, later on, you got sick. Science told you it wasn’t tick-related, and (if you are to be believed) offered “nothing but psychiatry”.

      Which you rejected.

      Then, you later recieved “CLD”-related “treatment” for your constellation of pains and symptoms. But, you don’t say how that worked out.

      I certainly hope you now free of your ailments, and not just poorer. But, either way, I can assure you that science is not your enemy.

      In absolute contrast to so-called “CAM”, science usually exhibits the humility not to pretend to know what it doesn’t know. And science utilises well-developed mechanisms for identifying when someone’s getting the science wrong.
      .

      1. whencarsfly says:

        But “science’ as you describe here has historically ignored the fact that the science that is known is only the science that has been learned not the whole of available scientific yet to be discovered.

        Hopefully when you students graduate you will at some point realize this fact and truly pursue that which is unknown as opposed to that which is known by the professors who profess the limits of their knowledge to you as the totally of knowledge.

        One of the lessons I learned upon graduating from college was the limits of my knowledge. This awareness has led to discovery of knowledge that those who are “enlightened” will likely never know absent comparable life experiences.

        1. WilliamLawrenceUtridge says:

          If your comment had an ounce of merit to it, science would stop. It has not. Science builds on previous knowledge, and any new knowledge must integrate with the old – either by fitting seamlessly into the existing paradigm, or by explaining everything the old paradigm explained, plus some extras. But above all, science advances through empirical evidence. You can’t merely assert, then pretend you’ve won. You’ve got to be able to demonstrate your point is accurate through repeated tests that converge on an answer and can be repeated by anyone undertaking similar tests. Science doesn’t know everything, but that doesn’t mean you can make stuff up and have it taken as fact. You have to prove it, with replicable results.

  38. davdoodles says:

    “Suzy Cohen bills herself as “America’s Pharmacist”.”

    Is there anyone in America who describes themself as “America’s” anything, that isn’t a charlatan, a woo-spewin’ loon, or both?
    .

  39. elburto says:

    B.b.but Dav, correlation always implies causation! That’s why the VAERS lists girls who died in car crashes months after receiving Gardasil. I mean, what else could have caused it?

    g believe apple juice caused my muscles to stop functioning. I never drink Apple juice but last February I had some. The very next day I was admitted to my local hospital, and my feet haven’t touched the floor since then.

    Has to be the juice, right? Every other part of that day’s routine was entirely normal, the juice was the only outlier.

    BTW, every detail of this anecdote is true. The juice, two weeks in hospital, bedbound since then. The difference being, of course, that I’m not superstitions and I believed.e medical science when tests proved that apple juice was not to blame,

    1. whencarsfly says:

      @elburto Surely you intended to say I believed “existing” medical science…

      1. vadaisy says:

        @elburto Surely you intended to say I believed “existing” medical science…

        As awesome as elburto may be, elburto does not own a crystal ball to foretell the future. Do you? If you have no evidence, then don’t make the claim. That is what separates the real scientists and physicians from the quacks and charlatans.

        1. whencarsfly says:

          So much name calling on here for such a cerebral gathering of non-quacks and non-charlatan scientists. Hardly seems productive, but it is easy.

      2. windriven says:

        Don’t be a douche. All science is existing science. No one suggests that science is a full jug. But it is a rigorous program for discovering truth and rejecting nonsense.
        You seem to have a startlingly expansive notion of ‘what might be’. It is a manifestation of a shocking level of credulity.

        Part of the notion SCIENCE based medicine is scientific plausibility. Science may not know everything but it does know a hell of a lot. You board an aircraft with confidence because flight surfaces and flight controls were developed scientifically, not because some bozo thought a given airfoil shape looked cool. You punch a few numbers into your iPhone and speak to your cousin in Belgium because that phone is designed in lock step with scientific principles – not because it contains magic.

        In an earlier comment you wrote:

        “One of the lessons I learned upon graduating from college was the limits of my knowledge.”

        I would agree that understanding the limits of one’s knowledge is essential to becoming educated. But understanding the limits is rather different than ignoring the knowledge that you do have. Science is a method and a scaffold on which knowledge is discovered and framed. Scientific plausibility means that a new idea is consistent with what is known. It is plausible that the human brain can be directly interfaced with electro-mechanical devices. It is not plausible that you can bend a spoon by thinking about it.

        1. whencarsfly says:

          After spending 15 years in the civil engineering profession prior to changing careers, I find your education in science and specifically in physics very enlightening. Not so sure about your “douche” reference though; they didn’t teach that when I was in school back in the dark ages I s’pose.

          1. ab says:

            Why, we call that logical fallacy “Argument from Authority”, you ultracrepidarian!

          2. WilliamLawrenceUtridge says:

            They also didn’t apparently teach you epistemology and history of science. Science developed and excelled by challenging, outright discarding, the idea that mere expertise is enough for an idea to be believed. LLMDs and related groups are moving backwards by insisting their claims are immune to testing, that their experiences are enough to justify their claims, that they are unique among humans in the infallibility of their ability to link cause and effect purely through their own experience and knowledge.

            A real scientist tests their ideas, and discards the ones that consistently fail. They learn from criticism, they don’t ignore it. They attempt to gather support from their scientific peers, they don’t jump directly to patients and politicians. There are a lot of specific reasons to question chronic Lyme disease, the tactics used by proponents is a rather substantial one.

          3. whencarsfly says:

            Yes, thank you for the education William, I have spent more than my share of time in calculus and physics courses proving my findings to have a fair understanding of the process…and I spent a career in practical application of those “theories”.

          4. windriven says:

            “I have spent more than my share of time in calculus and physics courses proving my findings to have a fair understanding of the process”

            Amazing. Like a TRS-80 you can execute the instructions but apparently never grasped the underlying theory. Perhaps this explains your entire avoidance of my original point. Is it possible that you are actually a relatively crude algorithm engaged in a Turing test? Fail.

          5. Whencarsfly says:

            @windriven It would’ve been a lot funnier if you said “slide rule” in place of “TRS-80″. An “old” computer programming adage is “garbage in, garbage out”, I s’pose that’s a bit analogous to humans in some instances.

          6. windriven says:

            “It would’ve been a lot funnier if you said “slide rule” in place of “TRS-80″.”

            Hardly. Slide rules cannot execute instructions. Are you too simple minded to understand the analogy I drew?

  40. Camp Other says:

    The issue I’ve had over chronic Lyme disease is that a number of times blogs and the media do not mention the fact that 10-20% of patients who contract Lyme disease do go on to experience persisting symptoms. These symptoms can involve joint pain, moderate to severe fatigue, cognitive problems (such as short term memory problems); peripheral neuropathy and nerve pain. Symptoms can be serious and debilitating – sometimes quality of life indicators for it measure as severe as they are for congestive heart failure patients – as was mentioned in the Klempner clinical trial on chronic Lyme disease (or what you can call post-treatment Lyme disease, but the NIH-NIAID has also used “chronic Lyme disease” in its trials and documents).

    I’m well aware that to date there have been four clinical trials for chronic Lyme disease under the NIH-NIAID which used longer (up to 90 days) courses of antibiotics to treat patients, and of these, only two had subgroups which had some positive outcome.

    This has been said by a number of doctors to not be a resounding success, even if there was some positive response – so as people have been concerned about these outcomes and growing antibiotic resistance, the idea of giving patients longer courses of antibiotics has received a negative reception.

    I acknowledge this is the current reality, and yet I have to wonder why whenever these discussions come up about Borrelia burgdorferi, the first thing anyone mentions in the media or skeptical sites is often the doctors who use long term antibiotics rather than to look at the issue of persistence and what research is currently in progress or has been recently completed by different scientists?

    It seems to me that an opportunity for educating the general public about the microbiological side of any scientific controversy involving Lyme disease are never really discussed – it’s all about this charlatan or that pseudoscience, but not Lyme disease science. A laying out of evidence, if you will.

    The NIH-NIAID is conducting xenodiagnosis studies on chronic Lyme disease patients now, to see if uninfected ticks can pick up infection from patients who have a history of Lyme disease, were treated, and developed persisting symptoms. There have been a number of animal studies where spirochetes persisted past antibiotic treatment. Dr. Stephen Barthold has found non-cultivable, slowly dividing spirochetes in host mammals after they have been treated with antibiotics. He or his team are supposed to be working on follow-up studies to provide evidence to fulfill Koch’s postulates for infection. Dr. Linda Bockenstedt has recently found trapped spirochetal antigens around knee joints in her studies; it’s her conjecture that patients may experience symptoms due to these antigens – possibly an autoimmune, inflammatory process. Dr. Armin Alaedini has studied chronic Lyme disease patients, and based on evaluation of their antibodies, thinks that they may have been infected a long time based on a different antibody expression (Borrelia engages in promiscuous recombination; antigenic variation) than one typically sees. Why they were infected a long time and have this expression has yet to be determined. And the next researcher now interested in Borrelia burgdorferi’s persistence is Dr. Kim Lewis, an expert on persister cells.

    Something is going on in patients with persisting symptoms, though it is not well understood. But the condition – whether one calls it chronic Lyme disease or post-treatment Lyme disease – is a genuine phenomenon, one the CDC acknowledges as well as the NIH-NIAID.

    I don’t want people to overlook this or neglect the research being done on the issue in favor of always talking about the next alternative medicine doctor or patients who were scammed – though if patients genuinely were harmed or scammed, the public needs to be informed.

    All I’m asking is to please remember that some people have genuinely contracted Lyme disease and continue to have persisting symptoms, we need more support, and need more research to confirm what the pathology is. The above is a start. I’m concerned that with 300,000 cases of Lyme disease a year, if the CDC’s estimates scale up, then 15% of that is a potential 45,000 people with persisting symptoms annually as well.

    Thank you.

  41. vadaisy says:

    Geez, who would have guessed that Mercola is quick with a reply in defense of Dr. Dietrich Klinghardt the alleged world famous “Lyme-literate” doctor promoted in the film Under Our Skin. After reading Mercola, it becomes apparent that we are all sick because we have failed to paint the exterior of our houses with special paint to shield us from the ‘bad rays’. Beam me up, Scotty.

    This is nothing other than health fraud, pure and simple. Health and Medical Fraud. Why doesn’t law enforcement shut them down? Why?

    1. whencarsfly says:

      Why have you not contracted a multitude of tick-borne diseases, gone for a year without treatment, told it was all in your head and given two weeks of abx as a cure? why?

  42. Ug. This was like a woo takeover. Okay, for those who believe CLD is real, it is not. It has been researched and debunked. In science when a study (or test) is redone and does not acquire the same results the original test is designated unreliable. This is why science does not take one study to come to a consensus.. It takes many, many studies to consider the hypothesis reliable. This is why there are so many games in the NBA and MLB during playoffs and the finals. They are looking for reliability in the teams wins. #41 I am sorry for your pain, post hoc ergo propter hoc. You are confusing correlation with causation. It is better for a practitioner to say “I don’t know” than one who says without hesitation or evidence they have the answer and conveniently the cure.

    It’s the law of demand and supply. These quacks look for what is the hot topic of medical discussion and then formulate a panacea to “cure” those afflicted with the “disorder/disease.” We all have pain/discomfort to one degree or another. We also are very subjective in our perception of this pain/discomfort. There are many confounding variables that can affect/effect pain/discomfort and a persons perception. Those who have been lead to believe they have CLD have been lied to. You have been coned into exerting time, energy, and resources to get to a place that does not exist in reality.

    #18-1 (Melissa Bell (FALDA) What are these (77) peer reviewed studies? Amazing claims require amazing evidence. If these are journals of dubious quality and standards than no. And sure they might be peer reviewed but if by “peer” you mean like minded CLD proponents, this does not equate consensus in SBM nor does it qualify as reliable science research. And subjecting a child to unnecessary and possibly life threatening treatments is tantamount to abuse.

    whencarsfly those doctors care deeply for their egos that treated your child. Their hubris, and chutzpa is their prime motivation, not the welfare of your child. That they were credulous and decided to be “maverick” doctors and go against what the evidence was showing. Their utter disregard for the scientific process. This is medical malfeasance.

    Wisdom is the ability to see past our egos when credible evidence is presented which contradicts what our strongly held beliefs are. This is what in science is called a consensus. It has nothing to do with popularity. Science is not a democracy. It is based upon the strength of the evidence. And that evidence is not just taken at face value. It is scrutinized to determine its reliability and validity.

    Of course this is a vast oversimplification of the entire process but those in SBM get my point. I believe Dara Ó Briain said it most eloquently when he said “Science knows it doesn’t know everything; otherwise, it’d stop. But just because science doesn’t know everything doesn’t mean you can fill in the gaps with whatever fairy tale most appeals to you.”

    Then again I could be wrong.

    1. whencarsfly says:

      @OldMan…I’m glad you’ve recovered enough from the Labor Day frat party to provide us with your brilliant analogy between sports and scientific study reviews.

      You have supplied us with sufficient information to conclude that you really don’t know what you are talking about. I have seen many who have been misled by a diagnosis of MS, ALS, Parkinsons, etc. I have seen many trade their death sentence for a further investigation into the cause of their symptoms and receive hope and healing in return for their effort. Do I conclude that every case of clinically diagnosed diseases like MS, ALS neuro or autoimmune disease is caused by a bacteria or virus? No, there’s not evidence to make that conclusion. Do I conclude that some cases are? Without question.

      I’m curious about what the “FALDA” after Mellissa Bell’s name means. Anyway, if she provided you with the 77 peer reviewed studies would that be evidence enough to make her case or would you require 78 as sufficient evidence?

      Malfeasance is a VERY strong word for a rare doctor who is simply following his obligation to do no further harm. Were I dealing with someone of equal education and experience I would require a retraction. I will not pursue that request based on the source of this inappropriate and ill informed accusation.

      If science is based on the strength of evidence then at one point is the evidence deemed worthy of full reliance? When you say that “science doesn’t know everything”, I assume you mean that at this point science does not explain everything. So how can the conclusion be drawn that existing science and testing sufficiently provide evidence to refute a diagnosis of Chronic Lyme Disease?

      Please educate me.

    2. Melissa Bell (FALDA) says:

      There are quite a bit of labels being thrown around. I would be careful – calling someone a child abuser is defamation per se (not to mention the frequent attacks on LLMDs by name).

      As for the studies, I would start with the Embers groundbreaking study funded by National Institutes of Health (NIH) (2012) which provides conclusive evidence that the conventional treatment of one month of antibiotics is ineffective at killing off the Lyme bacteria in monkeys who had been infected with Lyme 4 months earlier. A substantial percentage of the monkeys did show irradiation of infection with a longer treatment course. Posters here insist on repeating the standard and close-minded ideology of IDSA doctors. I encourage you to read and explain the results of the Embers study and the growing body of evidence that contradicts the standard IDSA view.

      http://www.plosone.org/article/info:doi/10.1371/journal.pone.0029914

      Other examples (this is a mere random sample; I am not going to type out 77 studies that you will simply ignore anyway):
      Ineffectiveness of Tigecycline against persistent Borrelia burgdorferi. Antimicro Agents Chemother, 54(2):643-51 (2010).
      Persistence of borrelial DNA in the joints of Borrelia burgdorferi-infected mice APMIS, after ceftriaxone treatment. 118(9):665-73 (2010).
      Meningitis, cranial neuritis, and radiculoneuritis associated with Borrelia burgdorferi J Am Vet Med Assn, 237(10):1180-5 Meningitis, cranial neuritis, and radiculoneuritis associated with Borrelia burgdorferi infection in a horse. J Am Vet Med Assn, 237(10):1180-5 (2008).
      Persistence of Borrelia burgdorferi following antibiotic treatment in mice. Antimicro Agents Chemother, 52(5):1728-36 (2008)
      In vitro susceptibility testing of Borrelia burgdorferi sensu lato isolates Antimicro Agents Chemother cultured from patients with erythema migrans before and after antimicrobial chemotherapy, 49(4):1294-1301 (2005).

      As for our family, your are slinging defamatory judgment when you do not remotely have the facts. Our son has confirmed Lyme, Bartonella, Mycoplasma, Chlamydia Pnemonia, parasitic protozoan and HHV infections. Under your biased logic, I suppose you would conclude that the multiple Labcorp and Quest results must be “false positives.” Our team of doctors rotated his treatment to address these confirmed infections, thankfully, with a positive response. There is nothing experimental about this approach. Not all patients who experience resistant infections have negative labs. Not all patients diagnosed with late stage Lyme use IV antibiotics (indeed, IV antibiotics are the exception).

      I suppose you would boldly conclude that our son’s metabolic specialist (affiliated with a major teaching hospital and prominent university) is a “quack” for diagnosing mitochondrial dysfunction secondary to his infections (his mito dysfunction is acquired, not genetic).

      I suppose his highly respected pediatric cardiologist is also a “quack” for diagnosing Neurally Mediated Hypotension secondary to Lyme Disease (late state neurological Lyme causes autonomic nervous system damage, including low blood pressure, fainting, heat intolerance, etc.).

      I suppose the neurologists at Johns Hopkins who suggested my son had Lyme Disease even though we live in Florida and had not recently traveled to an endemic area are also “quacks” (if only his team of doctors had listened, our son would have been more timely diagnosed, before his symptom list quadrupled and forced to spend lots of “quality time” in a pediatric hospital).

      I suppose his pediatrician and other doctors who have seen dramatic improvement in our son after treating with our pediatric LLMD are also “quacks”.

      I suppose that those diagnosed with HIV/AIDs early on should have simply withered and died while waiting for peer reviewed studies, rather than trying combinations of anti-virals that ultimately were proven effective.

      I suppose the parents who allow their children to take Doxycycline or Minocycline for years to treat the “life threatening” condition of acne are also committing child abuse.

      I suppose the scientists who opined that H. pylori infections, that could persist for decades, were a cause of ulcers were also “quacks” according to brilliant minds like yourself (that is, until they were proven to be right).

      I suppose the parents who extend antibiotic treatment for strep, sinus, ear or other infections that do not clear after the recommended treatment duration are committing child abuse as well.

      There has been much ado about the costs of LLMD treatment. Our treatment for Lyme and co-infections is vastly less expensive than the many MRIs, hospital stays, other tests and appointments with specialists before his proper diagnosis.

      While I think that it is fair game to subscribe your own beliefs regarding the treatment of Lyme, it is not fair to judge who rely upon a different set of scientific research. Before and for nearly a year after our son’s illness, we sought out conservative, mainstream doctors. These doctors utterly failed our son. Our LLMD brought him back to us. He went from writhing in pain, often unable to walk, spending countless days in a children’s hospital, to returning to school full time and returning to some sports. Before his illness, he earned all A+ grades. During and in early treatment, he earned Cs, Ds and Fs due to the cognitive dysfunction caused by late stage neurological Lyme Disease. After treatment, he is back to straight As. You may call it anecdotal or coincidental. But we call it a huge victory.

      There are good and bad in all professions. There are some medical care providers taking advantage of vulnerable patients (this is true for all illnesses). But there are also very gifted, brilliant, caring LLMDs as well. Many LLMDs actually have an immediate family member who suffered from inadequately treated Lyme Disease and co-infections. They saw first hand how life altering late stage Lyme Disease can be (not just merely aches and pains of every day living), and they have dedicated their practice to help others who are suffering. Likewise, if our own experience did not cut so deeply, we would not be so impassioned to help others.

      People have been suffering for decades, with only 4 studies performed relating to the efficacy of long term antibiotics to treat Lyme Disease. These 4 studies are fraught with shortfalls, including the duration of treatment, the single antibiotic used for treatment in the study(ies), the downplaying of improvement of certain symptoms such as fatigue, the small sample size, consideration of co-infections, etc.

      With a revised estimate of 300,000 new cases per year (the CDC/IDSA geniuses missed 90% of actual cases), and about 15% not responding to the IDSA’s standard course of treatment, there are over a million people who were not “cured”. This is unacceptable. We need more studies and research for a real cure, not just big pharma band aids that often do not work.

      1. ab says:

        If you are putting innocent children through quack treatments, you are a child abuser, IMO. Sue me. You’ll be just like the rest of the cranks who can’t defend their positions with science, reason, and logic, and turn to the courts to force their medieval thinking on others.

        1. whencarsfly says:

          That is so far over the line ab, were you not a child yourself I’d be appropriately offended. Oh to be so scientific, reasonable and logical…oh well, at least I have a good job.

        2. Melissa Bell (FLDA) says:

          Fine ab. Come out of the closet. Your cloaking of the comment as your misguided “opinion” does not shelter you from liability for so called statements of fact earlier. Where should I serve you with the complaint?

          I have a law degree and know how to use it. I would not have to prove CLD to prevail, just that I have not abused by child by treating a multitude of confirmed infections. We have some of the top specialists in the country (both mainstream and LLMD). Our son is remarkably better. Bring it on.

          I have cited ample scientific research that you apparently refuse to consider.

          1. ab says:

            I have apparently hit a sore spot. You really need some help, internet troll. I just hope the children you have abused by putting them through these quack treatments do not end up spending a lifetime in therapy, but they most likely will. Do yourself a big favor: talk to a therapist, get away from the quackery business (that is all too eager to take all of your money – you are being sucked dry and it has nothing to do with “big pharma”), and educate yourself. It will take time, but you can do it if you extricate yourself from this awful situation now. YOU have the power to do it. Good luck.

          2. Melissa Bell (FLDA) says:

            @ab – I see you are still hiding in the closet as you spew your uneducated hatred (which I suppose makes you the troll since you won’t reveal your identity). Our insurance company is thrilled that we found an answer and effective treatment for my son’s illness. You obviously have issues well beyond the scope of this story. Rest assured, even if you don’t come out, I can find you.

      2. WilliamLawrenceUtridge says:

        People aren’t mice, nor are they macaques. The fact that many LLMDs have family members who allegedly suffered from CLD isn’t a boon to their reputation, it’s a conflict of interest. Financial COIs are not the only type, and desperately wanting a cure for your mom, or daughter, or nephew or cousin can distort reasoning just as much as an FDA-approval process.

        If CLD exists, if it is real, then one should be able to demonstrate this in well-controlled studies. Anecdotes of one’s family are not sufficient. You aren’t going to convince most of the regulars here with them. If you acknowledged that they were hypothesis-generating starting points, you might get respect or at least a pass. Presenting them as if they were proof, in particular as if they were unquestionable proof, will get you little respect. If you don’t understand why this is, you should brush up on basic research methodologies.

        1. Melissa Bell (FALDA) says:

          You have utterly misinterpreted my comments to support your own twisted logic. Neither I nor any LLMD I have met purport to have all the answers (unlike numerous posters here) or offer a “cure” for LD. LLMDs and Lyme patients have been crying out for additional research (more than the criticized 4 studies over the past decade). The science is unsettled, and Lyme Disease has received a disproportionate share of funding. Since 1999, the average number of West Nile cases per year is 2,649 compared to an estimated 300,000 cases of Lyme Disease. Yet WNV receives nearly triple the funding from the federal government. Watching my child wither away in excruciating pain in a hospital while waiting for the government to decide it was an important enough issue to fund simply was not an option for us. I hope and pray through more funding and research, other children may be spared my own son’s experience. It is disgusting how callous and cold the posters are here.

          As for conflicts of interests, many of the so called prominent IDSA researchers have substantial conflicts of interest (patents, big pharma, ties to the insurance industry, etc.). Under your “emotional conflict of interest” logic, a child who watches his mom die from leukemia should not then go on to become a doctor or researcher seeking a cure for said illness because of a so called conflict of interest.

          There are roughly 45,000 patients per year that continue to suffer from symptoms, some debilitating, after the standard treatment. We need more research, funding and open minds to find better treatments/solutions.

          1. WilliamLawrenceUtridge says:

            Do you want more funding for Lyme disease, or chronic Lyme disease? The problem is the two are frequently mixed, and only the former has definitive proof of existing. If you are trying to prove the latter, then your most fruitful avenue would probably be the test you mentioned elsewhere. It seems many people accidentally or deliberately muddy the water by mixing the two, using Lyme disease to justify chronic Lyme disease.

            Your assessment of emotional COIs is incorrect. Using emotion to fuel a general interest or pursuit of a goal is valid. Using it to justify a specific empirical point is not. The appropriate comparison in your cancer example would be a child watching his mother die of cancer and insisting that she could have been saved by coffee enemas because one day she had a cup of coffee and perked up more than usual. In your specific case, we actually have a test that we can apply. Is there any evidence that would be sufficient to convince you that chronic Lyme disease doesn’t actually exist? Will anything ever make you change your mind about the existence of the condition? If the answer is “no, my experience is enough to convince me that it exists and nothing can change my mind”, then one could argue your COI is far more serious than anything most researchers experience when their labs are funded by Pfizer.

          2. vadaisy says:

            You’re opposed to COIs? Why then do you apparently support the work of certain leading “LLMDs”? At least one of them has what I see as substantial COIs, as do other “LLMDs”.

            How, for example, can one person presume to be a Lyme disease expert, a founder of a Lyme disease association, founder of a group of alleged international Lyme disease experts, and run a medical clinic to treat the patients. That would be the patients who are a member of his Lyme disease support association, and a patient at his medical practice, and who are being solicited to donate money to his medical organization in order to train more “Lyme-literate” doctors and pay the fee for them to join his medical organization and association? Does that not qualify as a conflict of interest to you?

            Oh, and when he or his colleagues are brought up on charges before a medical board, his associations and organization expect his patients to pay for their legal expenses. The patients, you, pay for their legal expenses when they commit medical negligence and apparent fraud against other patients. How sweet is that? The “LLMDs” get their patients to pay them so they can get away with abusing and harming other patients. Now that’s a bit more note-worthy than some Pharma stock.

      3. davdoodles says:

        “calling someone a child abuser is defamation per se”

        Not if they are a child abuser.
        .

  43. I think folks like the Chronic Lyme Disease proponents thrive on the uncertainty in medical diagnoses. Over a year ago I started experiencing a variety of non-specific symptoms and was struggling to make sense of things. On the off chance that it might provide some insight, I posted a question on the MedHelp AutoImmune Disease Forum.

    I won’t summarize here (again). It’s easier if you just read the link.

    I’m glad that I was skeptical (SBM can take some credit for that). With a tentative diagnoses of Undifferentiated Connective Tissue Disease, I wonder if pursuing a treatment of chronic bacterial infection and possibly steps to “boost my immune system” could have been detrimental, possibly even dangerous.

    For folks who read the link. My prickling skin sensation dissipated over the winter, hasn’t returned (yeah! It completely sucked). Seems no one is really sure if it was related to my blood tests, perimenopause hormone shifts or I don’t know…fairy dust. Mostly, now, I get pain in my shoulders, elbows and hands, which is a work in progress with my internist, rheumatologist and soon to be orthopedic surgeon.

    1. whencarsfly says:

      So was it determined that your symptoms were in your head? Did you have a Western Blot blood test? I’m confused by your analogy

      1. WilliamLawrenceUtridge says:

        The nub of MTR’s comment seems to be “sometimes symptoms happen for reasons we don’t understand, sometimes they appear, sometimes they disappear, and sometimes there simply are no explanations available at the time.”

          1. WilliamLawrenceUtridge says:

            Yes, “sometimes”, and that’s a reality of life. Sometimes there are no causes we can identify, and substituting certainty instead, dogmatic certainty that can’t be shifted, doesn’t help beyond providing a small measure of emotional comfort.

            Chronic Lyme disease proponents have adopted such certainty in the absence of objective proof, and for many it has become identity. I don’t know if any proof could be presented to them that their symptoms are not caused by Lyme disease. I suspect they will continue seeking confirmation over questions, indifferent to anything but their certainty.

        1. Yup WLU – that’s about right (and boy, does it aggravate me that you managed to sum it up in one sentence, when it took me 24 hours to get in on the internet :))

          Also, If you don’t know what’s going on, you have to be more not less careful balancing risk/benefit, because your risks AND benefit are somewhat unknown.

  44. @whencarsfly – were you able to read the links? It’s kinda hard to understand without reading the links, sorry.

    1. vadaisy says:

      LOL!!! Go Mouse! I just read your response on that link. That is one of the purveyors of chronic infectious diseases (and aliens from outer space), but you caught that. You smart Mouse, you…

      1. whencarsfly says:

        It’s not a competition vadaisy it’s a quest for the truth.

        1. vadaisy says:

          A quest for truth would not place any reliance of practitioners or experts who or whose practices believe in aliens from outer space visiting us on Earth. Frankly, I would not place any reliance on anyone making or supporting such claims. Why would you, or are you going to give me the “don’t throw the baby out with the bath water” remark. They are the same “experts” who promote the conspiracy theories as well. I don’t believe one word that comes out of their mouth, and that is based on experience.

          1. whencarsfly says:

            It’s ok, we’ll give you a chance to get your thoughts together…

    2. whencarsfly says:

      I did read, I still don’t see how that rules out the possibility of CLD. CLD causes an autoimmune response as a reaction by the body to an unknown intruder. If any of you lived a few months in my shoes your opinions would be wildly different and your understanding more complete.

      This is not a mere cerebral exercise for me, it’s life or death…that’s not an overstatement and not an invitation for more unproductive juvenile comments.

  45. Onetruth says:

    There is a test that is 100% accurate, it is called a freaking microscope. With advanced staining techniques even the idiots at IDSA should be able to master it, after all the Swiss have. Now tell me you were born with Borrelia in your system and it’s genetic, then we’ll talk all about lateral transfer and recombining and how you are still an idiot that doesn’t know what OspA is or does.

  46. Kathy says:

    “I know that you and your laptop can live forever.” LOL! @ladaisy. The ultimate come-on.

  47. Melissa Bell (FLDA) says:

    @WilliamLawrenceUtridge

    First, you state that there is a specific test? Which test are you referring to? The current 2 tier CDC testing scheme (that was only intended for SURVEILLANCE, not diagnosis) misses about 1/2 of actual case pursuant to numerous peer reviewed studies (including studies by Johns Hopkins).

    Funding for Lyme Disease and CLD are not mutually exclusive. For example, a test that can accurately detect the actual bacteria (rather than gauge an immune response to the bacteria) would be beneficial both to diagnose acute Lyme, and to determine if an infection has been eradicated. Otherwise, we need funding for both.

    In your myopic world, everyone knows that they were bit by a tick (reality check: only abut 1/2 do), would develop a telltale rash (reality check: as little as 1/2 do), would receive prompt diagnosis/treatment and did not contract a co-infection (or they happened to contract a co-infection that is covered by doxycycline). Under this scenario, I believe that the vast majority of people would be fine using the IDSA standards.

    While I have kept an open mind re. CLD, you clearly have not. I research both sides of the debate, often on a daily basis. In my mind, the jury is still out, and I look forward to the day when we have more definitive answers. Have you read or even considered the Embers study? Monkeys (not mice) were universally still infected with Bb after a standard duration of antibiotics when the infection was not treated for 4 months.

    As to the emotional COI analogy, once again you have utterly twisted and distorted the facts to support your flawed conclusion. We are not talking about coffee enemas, but rather the use of antibiotics to treat bacterial infections.

    1. whencarsfly says:

      Great comments @Melissa, based on valid, peer reviewed scientific research. Accurate and appropriate, both things that have been virtual strangers in most of the comments here.

    2. vadaisy says:

      You’re keeping an open mind is fine, until your brains fall out. Did you read the article Dr. Hall wrote? These “LLMDs” are selling NAET! You seem to do enough research – why don’t you describe to us what a spirochete-ridding NAET session is like? Seriously, please describe the treatments that your “LLMDs” are fighting for recognition. Describe an NAET session for Lyme disease.

    3. WilliamLawrenceUtridge says:

      We are not talking about coffee enemas, but rather the use of antibiotics to treat alleged bacterial infections.

      I’ve added the appropriate word there. One could also use “posited” or “hypothetical”, or really, anything that would indicate that there is no certainty that a bacteria is present. Antibiotics make sense if the bacteria are there. I don’t believe the CLD proponents have met that particular burden of proof. Certainly they assert it, but that doesn’t instantiate them into reality. And for that matter – if CLD symptoms were due to bacterial infection, I would expect to see dramatic improvement in symptoms. The failure to see such improvements in the studies suggests several things – the bacteria are resistant (in which case, why give the antibiotics) or the symptoms are not caused by a bacteria. In any case, long-term antibiotics seems to be a failed hypothesis. Perhaps there are long-term sequelae cause by acute Lyme disease, in which case, perhaps the antibiotics school of thought should be abandoned.

      I don’t have the time or inclination to do the kind of research necessary to address your specific points. What I will do instead, is defer to the far more expert people in the peer reviewed press, and at the CDC – who think CLD is bad science and doesn’t exist. I trust them, far more than I trust you. But hey, if you convince them, I’ll change my mind. I don’t know why you’d waste time on a website like this when you’ve got such strong science to back your claims.

  48. Camp Other says:

    WilliamLawrenceUtridge said:

    “Do you want more funding for Lyme disease, or chronic Lyme disease? The problem is the two are frequently mixed, and only the former has definitive proof of existing.”

    I’ll take this question myself: I want more funding to research the cause of and treatment for chronic and persisting symptoms which 10-20% of Lyme disease patients experience after initial or delayed initial treatment for infection.

    I don’t want to get tied up in the terminology; people get hung up on it when the same label is used to mean different conditions depending on which party is using it (including in the NIH-NIAID and Europe, where “chronic Lyme disease” can be used to mean “late stage Lyme disease”). This adds confusion to and subtracts from discussion.

    ” In your specific case, we actually have a test that we can apply.”

    Which test are you telling her about? Are you talking about a test which determines who has Lyme disease or not?

    1. WilliamLawrenceUtridge says:

      @Melissa Bell
      Actually, you’re talking about antibiotics to treat asserted bacterial infection. If patients actually had a bacteria in them, we could detect it. And if the treatments were genuinely effective, given the specificity of antibiotics for bacterial infection, then you would see genuine improvement in symptoms – not “some people may have been a bit less tired”. If CLD exists, and experts don’t think it does, then it might be caused by tick bites. It might also be psychosomatic. It might be caused by sequelae of tick bites that are utterly unrelated to bacterial infection bar the initiating factor. Much like wearing your seatbelt doesn’t repair broken bones from an accident, taking antibiotics to treat alleged post-acute Lyme disease in the absence of the bacteria is irrational. Sorry, I trust the experts – not you.

      @Camp Other
      I would be OK with such funding as well – investigating post-bite sequelae to see if it actually exists. However, such investigation should consider the possibility that the vague symptoms of fatigue, back ache and mental fuzziness (or whatever other nonspecific symptoms people attribute to CLD) are psychosomatic. Much like Morgellon’s disease, it’s possible CLD isn’t a biological entity, it’s a psychological entity.

      I lean towards CLD being a psychological agent simply because that’s the way the experts who aren’t “Lyme literate” seem to lean. There is a long history of physiological manifestations of psychological issues, throughout all cultures and times. The explanations change (animal magnetism, possession, witchcraft, wandering uterus, battle fatigue, somatization, conversion disorder and more) as do the manifestations, but they appear to be essentially the same phenomena appearing in different places and times. This may be one of the more modern variants. The entire diagnostic category may be polluted by the failure to appropriately distinguish between other explanations with similar symptoms. It’s certainly polluted by the strong emotions brought to the table by patients demanding solutions, demanding physiological explanations. It may be a physiological thing. It may also not be. One must be willing to consider both, and one must follow, not dictate, the evidence.

      1. whencarsfly says:

        Oh you silly kids and your theories :)

      2. Melissa Bell (FLDA) says:

        “If patients actually had a bacteria in them, we could detect it.” – again, I ask, what test are you referring to?????? This is the heart of the problem. There is no reliable test to culture the Bb bacteria. You insist there is no evidence of bacteria when there is no reliable test. How is that logical? Doctors routinely treat for bacterial infection without precise testing (i.e. prescribing antibiotics for a low WBC).

        You are oversimplifying the results of the 4 paltry studies. There were many variables not accounted for and other factors that could skew the outcome (i.e. small samples size, use of a single antibiotic when most LLMDs use combination therapy to cover both the cyst and spiral form of the Bb bacteria, relatively short duration of time for treatment, failure to consider co-infections).

        If co-infections are present, then the right antibiotics may not have been used in the studies (the testing for co-infections is worse than Lyme; there are many strains and standard tests only seek an antibody response to a single strain). Babesia, a common co-infection to Lyme, is actually a parasitic infection similar to malaria (antibiotics would not treat this type of infection).

        You do not have to believe me. The posters here in large part made up their minds long ago and refuse to even consider NIH scientific studies that do not support their view.

        I suppose you still think MS is psychosomatic too (this was the position taken before discovered otherwise).

        1. Melissa Bell (FLDA) says:

          This reply should have been directed to WilliamLawrenceUtridge post 52-1.

        2. vadaisy says:

          “refuse to consider NIH scientific studies…”

          This is the position of the NIH – NIAID as stated on their website,

          For early Lyme disease, a short course of oral antibiotics, such as doxycycline or amoxicillin, cures the majority of cases. In more complicated cases, Lyme disease can usually be successfully treated with 3 to 4 weeks of antibiotic therapy.

          After being treated for Lyme disease, some patients still report non-specific symptoms, including persistent pain, fatigue, impaired cognitive function, or unexplained numbness. These patients often show no evidence of active infection and may be diagnosed with post-Lyme disease syndrome (PLDS). In patients with PLDS, studies have shown that more antibiotic therapy is not beneficial and the risks outweigh the benefits.

        3. weing says:

          I doubt this will help, but I will give it a whirl. In the 4 articles you referenced, the author references reports of ongoing infections. These were apparently documented infections not presumed or assumed by the patient or whoever. I think they used PCR in at least one of them to document infections. If they did it in those cases, why not in the others? Because the tests were negative? If you document an infection, you treat it. The way these charlatans are going about it, there is no end point. How can they tell the infection has been successfully treated? They can’t. That’s why the poor patients end up on antibiotics for years. They don’t get better despite years of treatment because there was nothing there that the treatment would could work for.

        4. “There is no reliable test to culture the Bb bacteria. You insist there is no evidence of bacteria when there is no reliable test. How is that logical?”

          If there is no reliable test…how could it ever be determined that Bb is causing the disease? Whoops

          “Doctors routinely treat for bacterial infection without precise testing”

          For extant diseases at various levels of probability and safety (or sometimes as prophylaxis in the case of gross injury). Statistically those are entirely different things.

          1. Melissa Bell (FLDA) says:

            There are Lyme antibody tests to diagnose Lyme, but these tests are not helpful to determine if an infection has been eradicated post treatment. There are no current tests that can accurately culture Bb. As such it is not fair to say that there is “no bacteria” after treatment. As a result of these testing shortfalls, there is not a single study that can prove that patients are uniformly “cured” from a LD infection after 30 days of treatment, regardless if the infection was diagnosed in a late, disseminated stage, and regardless of whether co-infections were also present (individual genetics and strength of immune system are other variables that should be considered by treating physicians, not the IDSA).

            Likewise, LLMDs cannot routinely prove the Lyme bacteria is present (as is the case with many other infections that are diagnosed based upon clinical presentation). As repeatedly mentioned, funding for LD research has been abysmal. We need better, more reliable tests.

            The methodology used in the Embers clinical trials, that showed persistent infection after routine antibiotics, used a creative way to get around these testing pitfalls. Read the study.

        5. davdoodles says:

          “I suppose you still think MS is psychosomatic too (this was the position taken before discovered otherwise).”

          You need not go all the way back to 1886 when Jean-Martin Charcot used science (fancy that!) to determine that multiple sclerosis was a distinct disease. More on that in a moment.

          Given the state of science-based medicine in the mid-1800s, the constellation of symptoms, and the subtlety of the pathophysiology, it’s probably not such a bad thing if MS was believed to be psychosomatic.

          The alternative approach, which you seem to favour to this very day, would be to abandon science and simply assume that whatever random nostrum or invasive “treatment” some snake-oil crank dreamed up is preferable to the possibility that (heaven forefend!) “CLD” may be a mental illness, and sell them a pile of goods.

          I assume your approach to MS, were you alive in the early 1800s (a period you seem, pre-scientifically speaking, to prefer), you’d have made rash and unsound pronouncements and greedily inflicted your wretched patients with leaches or tincture of plumbum, for profit, all the while cursing Charcot for his lack of progress and refusal to pearl-clutch in sympathy.

          By the way, a slightly better (though still wholly irrelevant to proving anything you claim) analogy might be Warren’s discovery of H. Pylori and his joint work with Marshall re its relationship to stomach ulcers. Mostly, because then you’d just be sneering at the science of the last century, not the state of science in the year Chester A. Arthur died of complications of the (then fatal) Bright’s disease.

          But, I suspect you knew all of that already, and were just hoping we didn’t.
          .

          1. Melissa Bell (FLDA) says:

            The first scientific trials for MS were not until the late 1960s and before MRI imaging, female patients were often misdiagnosed with somatization.

            I already provided the H. Pylori analogy upthread. There was no need to be redundant.

            You are just too smart for your own good.

        6. “The methodology used in the Embers clinical trials, that showed persistent infection after routine antibiotics, used a creative way to get around these testing pitfalls. Read the study.”

          I did and to quote Inigo “I do not think it means what you think it means”

          “There are Lyme antibody tests to diagnose Lyme, but these tests are not helpful to determine if an infection has been eradicated post treatment.”

          The study you quote is not designed or sufficiently powered to determine such a general statement. If we assume your strongest case, that all positive tests PCR, RT-PCR, IFA, H&E are true positives then the strongest contender for a “real test” is IFA – a test that tests for…wait for it…antibodies.

          You could argue that C6 isn’t a good antibody test but the evidence from Embers isn’t very strong even there. If that *was* the purpose of their study why isn’t there an OR or RR of having Bb vs being C6 negative? Of course in order to do that there would have to be you know a…test…which you say doesn’t exist…so maybe you don’t really understand what you’re talking about.

          “There are no current tests that can accurately culture Bb.”

          What you mean is there is no *procedure* to *reliably* culture Bb. Which is incorrect. Admittedly Embers had no luck but you shouldn’t base your opinion on just one person. For all you know this was a lab accident.

        7. WilliamLawrenceUtridge says:

          Why do LLMDs attempt to deal with the cyst form of Bb when the only verified existence of cyst forms of Bb have been in spinal fluid in dishes? According to pubmed, it looks like studies of Bb, cysts and biofilms are still very much in the theoretical stage. And further, if Bb uses cyst-stages, intracellular sequestration and biofilms to hid from antibiotics, wouldn’t that then mean that subsequent post-treatment effects are due to the bacteria re-emerging and re-infecting the person? Wouldn’t this then, in turn, lead to the ability to confirm their presence through testing, much as during the initial infection stage? Yet, don’t CLD patients consistently fail to test positively using conventional tests, and only show up on proprietary, unvalidated tests? That seems odd.

  49. @whencarsfly – I’m sorry you are not well. There have been too many comments for me to keep up with. Reading Harriet Hall’s post reminded me of my experience and I wanted to share my perspective. It was not meant to be any sort of commentary on your experience, which I’m not familiar with.

    While I am not deathly ill, I do not think of this as a cerebral exercise. The positive tests that I mentioned in my link, along with my symptoms are indicative of auto-immune diseases like Lupus, Scleroderma, Rheumatoid Arthritis. My reading indicates that my diagnoses has up to a 30% chance of evolving into one of those not very fun disease in the first 3 years after diagnoses. Personally, if I’m trying to avoid those diseases, I’m not wild about suggestions like “ramping up the immune system”, when the only know effective treatment for those diseases is modifying or suppressing the immune system. But, if well established experts in the field of rheumatology adopt such a policy as a best practice after considering solid evidence of benefit over risk, I would consider it. I haven’t seen that happen.

    As to your question about whether I’ve been tested for Lyme. Some ANA testing is known as ELISA, but I think you are talking about something different. I can’t say I know, I’ve had a bunch of blood tests and I haven’t particular paid attention to many of the ones with normal results but I don’t, off-hand, see an ELISA.

    But, I haven’t seen a good reason to be tested (or retested) for lyme. My symptoms started in winter, I’ve never had a lyme type rash, I’ve never seen a tick on me, aside from a couple of very non-specific symptoms, which also are caused by a long list of other conditions, I don’t fit the symptom profile. Other than stating that chronic bacterial infections can cause autoimmune disease, the PhD who responded to my MedHelp question didn’t give me any reason to get tested for lyme disease…or any other specific disease. Is lyme disease usually associated with a positive ANA and low C3 and C4 levels? I didn’t find any such connection in my reading. Many things can cause auto-immune diseases to flare – viral or bacterial infection, stress, fatigue, hormone changes, chemical exposures, exposure to sunlight. But eliminating one of those triggers doesn’t cure the auto-immune disease. There will be more exposures to viruses and bacteria, women with Lupus aren’t cured when they go through menopause, etc.

    Which is not to say that I won’t find someday, whoops! the doctors missed lyme disease, a tumor, celiac disease, spinal degeneration or any one of the many conditions that one or more of my symptoms suggests. That’s what I meant by “uncertainty” It’s just not possible to “rule out” all of the many less likely possibilities. But, for me, the most sane route is to follow the likeliest leads…and to be honest, I resent it when “experts” use my time AND energy (physical and emotional) to pursue long shots.

    Lastly, I’m not sure what you mean by unproductive or juvenile. I do like to joke around a bit, but none of my joking has been directed at you. If you are referring to other folk’s comments…I can’t say I always approve of how arguments are presented by other commentors, but I’m not their mother (Lucky them. ;)) and I haven’t been following the discussion, so I’m clueless on this one.

    1. Whencarsfly says:

      Thank you mouse, I mean that sincerely. I wouldn’t waste time or money on the Elisa test, you need the Western Blot done at iGenex labs. As a matter of fact, iGenex.com
      Has some great information for those truly seeking some answers about the available science as it relates to tick-borne diseases…it’s worth a look.

      1. Thanks whencarsfly. – I’m afraid, when I search for igenex on google, I find multiple articles speaking about multiple investigations from different health agencies and at least one large fine for non-compliance. In general, I have found that avoiding organizations with those kinds of google results have served me well.

        1. Whencarsfly says:

          Well played @mouse, I can assume then that you’re not actually ill as you described earlier.

          1. vadaisy says:

            She’s just a lot smarter than the average patient.

          2. Guess I should check the notify me of follow-ups box, cause I just found this comment.

            @Whencarsfly: you recommended an organization. I checked it out on google. This is the same thing I did when I was adopting our children, looking at educational programs for my kids, give money to charity, finding a doctor for myself and my children. I don’t know why that would signify that I’m not actually ill as I described. That would be a wrong assumption. In my MedHelp question and here, I gave as accurate an account of my illness/health as I possibly could, given the information I have.

            It’s relatively pointless to pursue a discussion with someone who accuses you of lying when they don’t like your answers.

          3. WilliamLawrenceUtridge says:

            Oh snap.

        2. Melissa Bell (FLDA) says:

          As mentioned previously, iGeneX has been found to be vastly more reliable than labs utilizing the CDC’s 2 tier surveillance testing scheme. Look beyond dated articles before closing your mind.

          Many Lyme specialists prefer to have a Western Blot through the lab iGeneX (www.iGeneX.com) for three reasons: (1) iGeneX tests for multiple strains of Borrelia Burgdorferi (Bb), the bacteria that causes Lyme Disease (commercial labs such as Labcorp and Quest only test for a single strain of Bb); (2) IGeneX also considers additional highly relevant bands 31 and 34 (assuming you did not have the Lyme vaccine that was briefly on the market, these bands are highly probative); and (3) iGeneX reveals intensity for specific bands (not present, equivocal, low, medium and high).

          iGeneX has exceeded 98% on the past 9 years of proficiency ratings. There are no investigations for fraud or incompetence. IGeneX is in compliance with CMS (CLIA) and other State Health Agencies. To ensure that it maintains the standards of a “High Complexity Testing Laboratory” and is in compliance with National and State Health Agencies, IGeneX is inspected by the California Department of Health and New York State Department of Health on a regular basis, prior to renewal of licenses. The only issues (back in 2001) related to documentation, and a urine antigen test, not the tests relied upon LLMDs such as the Western Blot.

          Compared to iGeneX, that the CDC’s two-tiered testing scheme, that has been in place for decades, is far less reliable. Indeed, numerous peer reviewed studies have shown that the tests miss approximately 1/2 of actual cases. Although the tests were intended for surveillance purposes, doctors, the CDC, IDSA and insurance companies routinely use the tests for diagnostic purposes. China has recognized the fallibility of the CDC’s criteria, and only require 2 positive bands for a positive Western Blot, compared to the CDC’s 7.

          Rather than blindly following the CDC/IDSA, do your own research. Unfortunately, we once trusted these guidelines too (as well as the admittedly false number of reported cases, which the CDC now concedes was 1/10 of the actual number). Such reliance resulted in heart wrenching suffering for my then 11 year old son. Once we started doing our own research and carefully examining both sides of the scientific research, we finally were able to turn his terrible health slide into building recovery.

          1. “As mentioned previously, iGeneX has been found to be vastly more reliable than labs utilizing the CDC’s 2 tier surveillance testing scheme.”

            Can you point to an article demonstrating this. Not to mention that you don’t mention what you mean by “reliable”. Sensitive? Specific? PPV? What?

            I don’t doubt that iGene’s analysis is more sensitive than the CDC. I have a far more sensitive test than iGene’s – I do it for free too. In fact I guarantee that my test identifies absolutely 100% of all Bb carriers at all stages. If I’m wrong I write you a $1000 cheque.

          2. Sorry that should read: “I don’t doubt that iGene’s analysis is more specific than the CDC. I have a far more specific test than iGene’s”

          3. Man do I need sleep. “sensitive” is correct.

  50. WLU -” I lean towards CLD being a psychological agent simply because that’s the way the experts who aren’t “Lyme literate” seem to lean. There is a long history of physiological manifestations of psychological issues, throughout all cultures and times. ”

    Eh? – WLU you often seem to lean toward a psychological explanation, but without knowing how well done the diagnostic process was for the patients, it’s very difficult to make that case. Really, I’m sure there are many good doctor out there, but many doctors do not follow best practices…something like 50% by a survey I read recently. And “historically”? I’m really not believing the the quality of historical diagnoses (diagnosi?)

    Then again, do you have a good statistic for the percentage of people who have been diagnosed with CLD who received a work-up that was adequate to rule out long term effects from a past lyme infection or other organic causes and strongly suggest a psychological explanation?

    I say this because two of my dear friends were given psychological explanations for their physical symptoms, only to later be diagnosed with a meningioma (tennis ball size non-cancerous tumor of the lining of her brain) and thyroid cancer. So I tend to think seriously about the fact that doctors miss diseases and other conditions quite frequently due to oversight or the difficulty of diagnosing some organic* conditions.

    *I have no idea what an organic condition is….does that mean that a psychological condition is chemical…inorganic? Huh? Oh well, hopefully you know what I mean.

  51. Whencarsfly says:

    As they say, “you don’t get it until you get it”, it would suffice to say that you sir don’t yet “get it”.

    Beatuifully framed argument for acadamia; if turn you that in as your next paper for your Logic or Debate class, it’s sure to get an “A”!

    1. davdoodles says:

      Ok, here’s a simpler version, just for you:

      In the “MS used to be thought to be psychosomatic until Charcot” example, WE might have been in the “psychosomatic” camp, but that doesn’t make YOU Charcot.

      Unless-and-until science proves you right, it makes you the quacks and charlatans.

      And don’t pretend otherwise.

      Clear enough for ya now?
      .

      1. Whencarsfly says:

        Don’t believe I asked for clarification so no need to simplify it for me @dav: I have education and experience and they have served me well, thanks though for your effort though!

    2. ab says:

      Hey, old lying dude who hates academia and scientists: did a pre-med student beat you up as a kid or something? Are you actually Joe The Plumber? After reading your posts, I guess you would have a divide-by-zero error in your brain if you met my PCP. He’s been working as an APPLIED (why so much hate for the word “theory”, gramps?) doctor for over twenty years, and he uses science based medicine, reason, and logic to make his diagnoses.

      1. Whencarsfly says:

        @Ab: Uhhhhh, I know you are but what am I?

        1. ab says:

          Ignorant.

          1. Whencarsfly says:

            Yep. Like a fox.

          2. windriven says:

            “Yep. Like a fox.”

            True enough! I’ve never met an educated fox. I saw a rabid fox once. I’ve seen a bunch of dead foxes.

            In short, only an idiot takes medical advice from a fox.

          3. Whencarsfly says:

            @windriven. You really should get out more.

          4. windriven says:

            Ah, carsfly, you really think yourself the card don’t you?

            Your insults are (sacre bleu!) lamer than what passes for your reasoning.

            Read on! But do try to still your pen until you have something useful to say, you’re embarrassing yourself.

  52. Pareidolius says:

    I asked earlier up thread, who benefits from this conspiracy against CLD? Certainly not Pharmaceutical companies who would sell and develop more antibiotics to fight it. Certainly not doctors who would rake in the billing with all the new cases being reported. That leaves the Reptiloids, the Illuminati and the Bilderbergers. Or the LLMD’s who wouldn’t be so special anymore . . . but seriously, who benefits? Because all of the appeals to emotion in film and online would have one believe it’s just pure sadism against those who suffer. That’s not a good enough answer though. Any thoughts from the LLMD crowd on this?

    1. Melissa Bell (FLDA) says:

      I have no idea what the motivations are. I can tell you that most antibiotics used to treat LD are generics, with very little profit margin. Undiagnosed, inadequately treated and/or residual broad ranging symptoms can be “treated” with much more lucrative pharmaceutical drugs for fatigue, joint pain, psychiatric symptoms etc.

    2. Whencarsfly says:

      Pharmaceuticals don’t have a specific drug they can sell for CLD like they do for RA, MS, Fibromyalgia, Parkinson’s. For Pharma it’s better to diagnose these diseases that are often symptoms of Tick borne diseases, then they can sell these high prices drugs for the lifetime of the patient. There will probably soon be a push for a vaccine to prevent tick-borne diseases. Just a guess but keep an eye out.

      Insurance companies want to force all doctors to rely on the CDC guidelines so they can continue to deny payment for treatment outside of the guidelines. Another guess.

      There are likely the egos of the ID docs who wrote the guidelines that are in play as well, I suppose. Look at the doctors who wrote the guidelines and see if there are any ties to big pharma or insurance companies…I suspect you might be surprised by what you find.

      1. WilliamLawrenceUtridge says:

        I prefer my insurance company reimburse based on expert recommendations. Keeps the premiums down. You’re viewing the decision based on reliance on CDC guidelines as if it were a conspiracy, when it’s simply good business sense (keeps profits up while still being defensible from a medical perspective). It’s not really a guess regarding why insurance companies restrict themselves to the CDC guidelines, and given the finite resources available for treating all diseases, it’s one that makes the most sense.

        Even if the doctors have ties to big pharma, that doesn’t invalidate their analysis, nor does it magically make the evidence they base their decisions on disappear. And rather than assuming their decisions are based on ego, perhaps they are based on evidence and are merely unswayed by testimonials that they know are emotionally touching, but scientifically of little value.

        I would be unsurprised to see an ID doctor with expertise in Lyme disease to be funded by Pfizer or another member of Big Pharma. Labs are expensive. But it’s the reason to delve into the methods section before the introduction or conclusion – in the absence of blatant fraud, spin and industry influence generally appears in the interpretation rather than the numbers.

    3. vadaisy says:

      The LLMDs benefit. It is a psychologically manipulating tool used to distance their patients from others who may intervene and stop their unnecessary, harmful and expensive treatments. The patients are taught not to trust anyone except the “Lyme-literate” doctors and keep distance and protection against everyone else.

      1. Melissa Bell (FLDA) says:

        These are bold, global accusations not supported by facts. What good is it serving to spread such lies and misconceptions?

        Our LLMD gladly works with a team of specialists for our son, including a pediatric neurologist, pediatric ID doctor, pediatric cardiologist, pediatric metabolic specialist and pediatric allergy/immunologist (late stage, undiagnosed neurological Lyme reeked havoc on my son). This is also the case with the countless other Lyme families. If a particular LLMD took that type of exclusionary approach, it would be my recommendation to find another LLMD.

        Incidentally, our LD treatment for us son is a minute fraction of the cost of my son’s care. Our insurance company is paying far less since he was finally diagnosed and treated properly. It is rare for LD patients to use IV antibiotics. Most use generic, inexpensive antibiotics, which are much less expensive than the patented phara drugs he had been prescribed to treat his undiagnosed Lyme symptoms (migraines, vertigo, joint pain, etc.).

        For what it is worth, our son’s main stream IDSA ID doctor recommended MORE aggressive treatment than his LLMD.

        1. vadaisy says:

          Those are intriguing claims that most “LLMDs” do not prescribe IV antibiotics. Why don’t you write a list of the “LLMDs” that do not prescribe IV antibiotics so we can judge for ourselves? Every single “LLMD” and every single “chronic Lyme disease” patient I’ve ever encountered throughout many years has been prescribed long-term IV antibiotics.

          1. Whencarsfly says:

            @Vadaisy – So we are to infer then that you’ve encountered every CLD patient in existence?

          2. Camp Other says:

            How long ago were you in contact with such patients? Because more recent research from Europe indicates that higher doses of oral doxycycline may be comparable to using IV ceftriaxone in treating Lyme disease in select patients with a neurological presentation.

            I’ve talked to many patients and a few LLMDs. The doctors are trying to work with patients’ insurance companies based on what treatments they will cover and work with what patients can afford, on top of what is supported by scientific research. More than one factor goes into making treatment decisions.

            If oral doxycycline and other oral antibiotics are equally efficacious and do the job, doctors will use them. LLMDs prefer to prescribe oral antibiotics because they know IVs entail additional risks and are generally not convenient for patients – plus insurance is far more likely to cover them. IV antibiotics are very expensive, and inserting a PICC line and going to an outpatient center for initial treatment also runs up the bill.

          3. weing says:

            “Those are intriguing claims that most “LLMDs” do not prescribe IV antibiotics. Why don’t you write a list of the “LLMDs” that do not prescribe IV antibiotics so we can judge for ourselves?”

            I second that request. Maybe I could convince the one patient I have with this ‘diagnosis’ to see one of them. Unless they will just give him oral antibiotics forever. I think the patient has sequelae from Lyme disease. I do not think he has ongoing infection. I agree 100% that more research needs to be done into treating the sequelae that some patients get.

          4. Melissa Bell (FLDA) says:

            Not surprisingly, you have completely misconstrued my comment. If you read any of my posts, I actually stated very few Lyme patients receive IV antibiotics (because in the vast majority of cases, oral antibiotics are sufficient). LLMDs and IDSA doctors both recommend IV antibiotics for disseminated, late stage neurological Lyme, particularly when oral antibiotics have proven ineffective. Apparently your anecdotal experience now makes you an “expert” on how each and every LLMD and Lyme patient treats chronic or late stage LD.

      2. Kevin Wolfe says:

        Hahaha! I’m sorry, can’t stop laughing long enough to comment @vadaisy hahahhahaha!

        Good one, I guess that’s why they risk being sued and losing their livelihood. Surely they could not make as much money in some other practice. That explains it perfectly-great point?! Oh brother.

        1. vadaisy says:

          That is true. They wouldn’t succeed in some other practice. After all, what legitimate medical institutions make chelating invisible toxins or practicing NAET part of their practice regimen? Anyone that tries, gets laughed out of the room. This is why most “LLMDs” can’t maintain participation agreements with their local hospital systems and don’t accept insurance. They can’t. They’ve been laughed out of the medical system by their own peers.

  53. davdoodles says:

    Warren and Marshall’s cure relied on off-patent antibiotics too.

    Didn’t stop them (or magically excuse them) from doing the quality science and medical research needed to prove their theory, though.
    .

  54. Camp Other says:

    WilliamLawrenceUtridge says:

    “@Camp Other
 I would be OK with such funding as well – investigating post-bite sequelae to see if it actually exists. However, such investigation should consider the possibility that the vague symptoms of fatigue, back ache and mental fuzziness (or whatever other nonspecific symptoms people attribute to CLD) are psychosomatic. Much like Morgellon’s disease, it’s possible CLD isn’t a biological entity, it’s a psychological entity.”

    The IDSA’s 2006 Guidelines for the treatment of Lyme disease state:

    “The largest of the controlled treatment trials of patients with post–Lyme disease complaints (which included separate treatment studies for seropositive and seronegative patients) defined post–Lyme disease syndrome as the presence of any of the following symptoms: widespread musculoskeletal pain, cognitive complaints, radicular pain, paresthesias, or dysesthesias, provided the symptoms interfered with the ability to function [288]. The symptoms also had to begin within 6 months after the initial diagnosis and treatment of B. burgdorferi infection and had to persist for at least 6 months. Although not a formal component of the definition, 90% of the patients in this particular trial also complained of fatigue [289].”

    It’s not just fatigue, back ache, and mental fuzziness which can be experienced by patients with CLD/PTLDS. You’re correct in stating those are nonspecific symptoms, and they are subjective in nature. However, patients who have had Lyme disease and go on to develop disseminated, late stage Lyme disease often experience the same sort of symptoms which arose then which are not that nonspecific.

    For example:
    – chronic neuropathic pain = Weissenbacher S, Ring J, Hofmann H. Gabapentin for the symptomatic treatment of chronic neuropathic pain in patients with late-stage lyme borreliosis: a pilot study. Dermatology 211(2), 123–127 (2005).
    - Months to years after the initial infection with B. burgdorferi, patients with Lyme disease may have chronic encephalopathy, polyneuropathy, or less commonly, leukoencephalitis. = Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N. Engl. J. Med. 323(21), 1438–1444 (1990)
    - ACA, also known as acrodermatitis chronica atrophicans (mainly European Lyme disease cases)
    - small fiber peripheral neuropathy (this was also recently found in patients with fibromyalgia)

    These are more common; one can also have ocular complications and less common complications which have yet to be confirmed as being triggered by Borrelia though there’s some correlation (such as primary cutaneous b-cell lymphoma).

    One distinction to be made here is unlike Morgellon’s, the IDSA has stated that any case definition of chronic Lyme disease or post-treatment Lyme disease (or Post Lyme) must include the patient having evidence of having been infected with Borrelia burgdorferi; must require the patient to have a history of Lyme disease. Morgellon’s, on the other hand, has no known antecedent, though there has been speculation about it – and many medical professionals have stated it is a psychological condition, delusional parasitosis.

    There have been more recent efforts to distinguish chronic Lyme disease/post treatment Lyme disease patients from those who have conditions which seem similar at first glance, such as chronic fatigue syndrome. One of the goals of these efforts is to find a solid biomarker or set of biomarkers for the condition.

    Two recent studies which are notable:

    - A proteomic study was completed which distinguished hundreds of proteins in CSF between chronic Lyme disease/PTLDS patients and CFS/ME patients: Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome – Schutzer et al -
    http://www.plosone.org/article/metrics/info%3Adoi%2F10.1371%2Fjournal.pone.0017287

    - An antibody study was completed which indicated those patients with a history of Lyme disease who developed persisting symptoms even after initial treatment either had the infection a long time or have an a different antibody response compared to other patients who contracted Lyme disease: Chandra A. et al. Clin. Immunol. http://dx.doi.org/10.1016/j.clim.2011.06.005 (2011). See also: http://www.nature.com/news/2011/110805/full/news.2011.463.html

    “I lean towards CLD being a psychological agent simply because that’s the way the experts who aren’t “Lyme literate” seem to lean.”

    I’m surprised to hear from you that experts think CLD/PTLDS is psychological – especially since the hypothesis of it being an autoimmune-like condition has been floated around for some time now.

    This meta analysis of several IDSA studies on chronic Lyme/post Lyme disease was completed, “Post-Lyme borreliosis syndrome: a meta-analysis of reported symptoms” by
    Victoria Cairns and Jon Godwin, in which a psychological diagnosis like depression or anxiety was not supported in CLD/PTLDS patients as a source of their symptoms. Dr. Allen Steere himself did not pinpoint a psychological cause for the condition:

    To quote from the full text:

    “The pattern of symptoms reported following LB appears to be different from that seen in fibromyalgia, depression, and chronic fatigue syndrome. […] Gaudino et al.16 compared patients with post-LB syndrome and persistent severe fatigue with patients with chronic fatigue syndrome. They found that, despite symptom overlap, the patients with post-LB syndrome showed significantly more global cognitive impairment in neurocognitive tests. Regarding the emotions, Elkins et al.22 observed lower positive affect (emotions such as joy, enthusiasm, and pleasure) but normal negative affect (emotions such as sadness, hopelessness, and guilt) in patients with post-LB syndrome. Positive affect is likely to be dampened by profound fatigue. Raised negative affect, a key component of depression, was not reported.

    Steere et al.24 wrote ‘it is hypothesized that Borrelia burgdorferi may trigger immunologic or neurohormonal processes in the brain that cause persistent pain, neurocognitive, or fatigue symptoms, despite spirochaetal killing with antibiotic therapy’.”

    - Based on research above and more recent research completed at John Hopkins University, those with CLD/post Lyme disease were found to have more physical dysfunction and did not have depression as a characteristic feature of their condition. (See full text here: http://www.lymemd.org/pdf/aucott_et_al_qol_research.pdf )

    In terms of the Hopkins paper, the authors had the following to say about PTLDS:

    “The significance, etiology, and perpetuation of PTLDS remain poorly understood. As a result, controversy in both the research and clinical realms exist surrounding each of these unknowns. There are three main, competing hypotheses of PTLDS pathogenesis. The first hypothesis posits the potential for an ongoing host inflammatory response independent of ongoing infection as suggested by molecular mimicry in antibiotic refractory late Lyme arthritis and anti-neuronal antibodies in PTLDS [30, 31]. Alternatively, inflammation may be driven by either occult persistent infection, as suggested by a recent mouse model of antibiotic-treated Borrelia burgdorferi infection [32]. These biologic explanations warrant further research that falls outside the scope of this paper.”

    So far, nothing I’ve read indicates it is psychological. More often, I’ve read it’s autoimmune in nature, and some suspect persisting infection though either of these hypotheses has yet to become a fully fledged theory. This might be why more treatment studies are lacking: Causation is still an issue here.

    1. vadaisy says:

      @CampOther, you do not seem to recognize or acknowledge the distinct differences between the entities labeled “chronic Lyme disease” and PTLDS. They are not the same. CLD lacks evidence of a persistent infection, and PTLDS is an evidenced group of symptoms which exist after a known bacterial infection has been adequately treated. People who have had a polio infection generally have continuing symptoms after treatment, some of them are profoundly disabled, but it does not mean they still have an active and treatable infection. Likewise, no amount of antibiotics will restore them to health.

      1. Whencarsfly says:

        Polio is a completely different disease @vadaisy. Your assertion does not refute or address the totality of @camp’s presentation and conclusion. Autoimmune symptoms are most often due to inflammation. This can cause a range of symptoms depending in the location of the trigger in the body and the body’s reaction to the trigger. This is overlooked (possibly on purpose) by those promoting a PTLDS diagnosis…a cop out just like the psychological determination.

        Well documented and brilliantly concluded @camp, you’ve obviously done your homework.

        1. vadaisy says:

          Inflammation does not always mean that there is an infection present. It’s absurd to make that assumption. By your statements, all autoimmune diseases and inflammatory conditions are caused by infection, and that has never been evidenced.

          1. Whencarsfly says:

            Did I say “all”?

      2. Camp Other says:

        vadaisy says:

        “@CampOther, you do not seem to recognize or acknowledge the distinct differences between the entities labeled “chronic Lyme disease” and PTLDS. They are not the same. CLD lacks evidence of a persistent infection, and PTLDS is an evidenced group of symptoms which exist after a known bacterial infection has been adequately treated.”

        Actually, the problem is one of semantics, of labeling. If you look at the international scientific literature on Lyme disease and also the NIH-NIAID, publications have used the term “chronic Lyme disease”, “post Lyme disease syndrome”, and “post-treatment Lyme disease”. “Chronic Lyme disease” has been more extensively used in European publications including recent times, where the term means late stage (stage 3) Lyme disease, and usually in a situation where the patient has not been treated with antibiotics or was undertreated. But “chronic Lyme disease” has also been used in the United States, in the past by many researchers and used it the same way European researchers have.

        It has become a sociopolitical phenomenon for Lyme disease activists to use the term “chronic Lyme disease” because their position is that they were in fact undertreated OR went totally untreated for Lyme disease for a long time until recently. Those who support an autoimmune or at least non-persistent infection model of patient’s post-treatment symptoms have used “post Lyme disease syndrome” to make a distinction from this usage of “chronic Lyme disease” and distance themselves from its originally intended meaning.

        Researchers who have not wanted to get swept up in the debate and wish to make clear that (as I quoted from Aucott’s paper to William elsewhere) the causative factor or factors of patients with persisting symptoms are UNKNOWN and yet to be determined by science use the term “post-treatment Lyme disease”. This term is viewed to be non-partisan, and to reflect reality as it is based on the state of the science. I for one think this is actually the best term, but not everyone is using it. Generally I end up falling into an alphabet soup to talk about something which, in my opinion, should just have one term unless one specifically means to say “late stage Lyme disease” which is very much about current infection (active or potentially latent).

        ” People who have had a polio infection generally have continuing symptoms after treatment, some of them are profoundly disabled, but it does not mean they still have an active and treatable infection.”

        True.

        “Likewise, no amount of antibiotics will restore them to health.”

        This is still under debate, though – otherwise the NIH-NIAID would not have taken their limited budget to fund a xenodiagnosis study where uninfected ticks are placed on chronic Lyme/post-treatment Lyme patients (see my problem?) to see if they pick up infection from their human hosts. And likewise, they would not have continued to fund studies by Dr. Stephen Barthold on more than one occasion to study spirochetal persistence in post-antibiotic treated animals. Think about it: Funding was already pretty limited before sequestration, only 25% of RO1 grants got accepted then, Lyme disease research already receives a small fraction of funding, and it has gotten even worse.

  55. Whencarsfly “Pharmaceuticals don’t have a specific drug they can sell for CLD like they do for RA, MS, Fibromyalgia, Parkinson’s. For Pharma it’s better to diagnose these diseases that are often symptoms of Tick borne diseases, then they can sell these high prices drugs for the lifetime of the patient.”

    I’m not sure if you are aware that some of the medications for the kinds of diseases you mention are shown through solid evidence to slow or stop the progression of disease. Some of them also have less severe side effects and hold lower risks for the patient than long term antibiotic treatment. A doctor who recommends treatment with antibiotics over the standard of care treatment for some of these diseases is doing so at the risk of long term health consequences for the patient. Don’t you see that as problematic?

    1. Melissa Bell (FLDA) says:

      There seems to be major misconceptions here regarding how LD is diagnosed, and what current tests for Lyme actually show.

      LLMDs are not diagnosing LD out of thin air. There are labs, considered in conjunction with symptoms to support a clinical diagnosis. When in doubt, LLMDs will sometimes do an antibiotic trial and then repeat a Western Blot (the use of antibiotics before testing can help provoke an immune response). When people test “negative” for LD, this is using the CDC’s SURVEILLANCE criteria, that was not intended for DIAGNOSIS of Lyme (but is erroneously used as such even though numerous peer review articles show that it misses about 1/2 of actual cases). Valuable insight can be gleaned from analyzing Western Blot bands, even if the overall result does not meet the CDC’s SURVEILLANCE criteria (if any of you read recent news, the CDC now concedes that such program misses 270,000 cases of LD each year, 90% of the total). When attempting to rule out LD, it is important to carefully consider Lyme-specific bands (those bands that represent evidence of serological exposure to Bb).

      Many Lyme doctors believe that a single Lyme-specific band, along with clinical presentation, is sufficient to diagnose consider a trial with antibiotics for LD (with an acknowledged 3% false positive rate). See: http://drcharlescrist.net/Borreliosis/Testing-for-Borreliosis/. Similarly, in China, a single positive IgG band coupled with a single IgM band is considered to be a positive Western Blot. See: http://www.ncbi.nlm.nih.gov/pubmed/21112481. In comparison, the CDC’s surveillance criteria requires a specific combination of 7 positive bands; iGeneX requires a total of 4 positive bands.

      Many pharma drugs are contraindicated for LD patients and have major side effects. For example, a friend had been diagnosed with RA by the all mighty Johns Hopkins, without considering LD as part of the differential diagnosis. She was on expensive, drugs with black box warning with risk of cancer for 7 years. Upon my urging, further tests revealed that she did NOT have RA, but rather CDC positive LD. The failure to timely diagnose has resulted in a more disseminated difficult to treat infection. Like so many others, she did not recall a tick bite and did not have a bullseye rash.

      Many with LD suffer mitochondrial dysfunction, making such patients more susceptible to severe side effects to pharma drugs (this was the case with our son with the medication prescribed by his neurologist for vertigo, before we knew he had LD; these side effects landed him in the children’s hospital for days with excruciating migraines that could only be relieved with morphine).

      As mentioned by Whencarsfly, many treatments for Lyme symptoms involved steroids, which are absolutely contraindicated for LD because they depress the immune system.

      1. vadaisy says:

        LLMDs are not diagnosing Lyme disease out of thin air.

        Some diagnose it based on one telephone conversation.

  56. Whencarsfly says:

    No. What I have seen, as in personally witnessed, is people who were given prescriptions to cope with symptoms while the underlying cause of the symptoms went untreated. Symptoms continue to worsen and the dosage is typically increased.

    Most of these drugs are either, steroid based (investigate steroids and bacterial infections), block pain signal and/or are anti-seizure medicine.

    Say what you will in theory. There is plenty of evidence contrary to what you are guys are apparently being taught. It would behoove you to investigate what the underlying cause is and treat it. You can throw out all of the snippy comments you like (you haven’t really been guilty of that mouse-so that’s not for you), but trust me, if you or a family member are given the death sentence dx of one if these diseases you will investigate what your options are.

    I prefer hope over a death sentence any day but I live in realville 24/7. I have nothing to prove to this group, but it is surprising and a bit disappointing to me that students do not choose to question the status quo and existing evidence.

    1. “I prefer hope over a death sentence any day but I live in realville 24/7.”

      Debatable.

      “I have nothing to prove to this group, but it is surprising and a bit disappointing to me that students do not choose to question the status quo and existing evidence.”

      So your philosophy is that any question to any body of evidence should be considered seriously? If not, then you have to make the case that the question you think should be asked meets the statistical power (or some threshold of statistical power) of the existing body of evidence. It should be obvious that your experience is insufficient.

      If you don’t believe there needs to be a threshold…then you might as well consider “When is purple?” a serious question.

      1. Whencarsfly says:

        Excellent point @jonathan…”when is purple” may actually be a more appropriate topic for this group to argue.

        1. You are being non-responsive.

          Either belief in the body of evidence against CLD is justified or it isn’t. Your flapping your gums about “questioning the status quo” is unnecessary posturing.

          1. Whencarsfly says:

            @Jonathan. I believe my reply was appropriate and sufficient.

          2. @whencarsfly – Your beliefs are not relevant here. You didn’t answer my question. That is being non-responsive. QED. Please try again.

        2. “I believe my reply was appropriate and sufficient.”

          @whencarsfly – Sadly your belief is not important. I posted a question. You did not answer. You are non-responsive. QED. Please try again.

          1. whencarsfly says:

            @Jonathan. My reply was appropriate and sufficient.

          2. @whencarsfly – “My reply was appropriate and sufficient.”

            It did not sufficiently (as in usefully) respond to my question. Hence it was “insufficient” and non-responsive. Next time you attempt to converse, don’t forget that if you’re responding to a statement then said statement forms the context of the response.

            If someone says: “How are you?” and you respond “Fine.” but actually mean “That elephant over there is fine but I am sick”. Then you are being non-responsive.

            While there is a finite-but-large set of contexts that your statement might be consistent with, the only one of consequence is the one being asked. In case you doubt me here is a partial list…

            It was sufficiently stupid.
            It was sufficiently uninformative.
            It was sufficiently useless.
            It was sufficiently wrong.

    2. weing says:

      Yes, it is disappointing that you choose not to question your existing evidence and beliefs. That you know what the truth is, and everyone else is just so stupid and closed-minded. That you are the singular person with the uncanny ability to tell who knows the real cause of the disease and who doesn’t. What can I say? That’s the human condition.

      The CLD experts, through methods known only to themselves, are able to tell when someone has the infection because there are no reliable tests for it. The treatments continue until the patient runs out of money or the insurance company gets tired of paying for continuous antibiotics. If there is no way of testing the presence of the infection, there is also no way of knowing that the infection is eradicated. Pretty good setup, don’t you think?

      1. Camp Other says:

        “The CLD experts, through methods known only to themselves, are able to tell when someone has the infection because there are no reliable tests for it.”

        There is some methodology that has to be applied by not only those who you label CLD experts but infectious disease specialists who determine in individual patient cases that someone needs retreatment or escalation of treatment from, say, oral doxycycline to IV ceftriaxone because they failed earlier treatment and continue to have symptoms.

        So my question (not just to you, but everyone) is how does an infectious disease specialist make this decision? There must be data they use to base it on – something empirical? About the only thing I’ve found that potentially is a clear indicator could be the processing of additional bands on the western blot or increasing number of bands, according to Johnson et al at the CDC. But how can one determine those antibodies are being generated in response to spirochete changing outer surface proteins to survive versus a spirochete which is on its way out? See, I have questions about this myself.

        Somewhere along the line one has to make the decision to retreat and/or escalate treatment. This decision may have to factor in a change in severity of symptoms (clinical presentation) in addition to additional tickborne disease serological testing and broader general tests of a patient’s CBC and immune factors.

        “If there is no way of testing the presence of the infection, there is also no way of knowing that the infection is eradicated. Pretty good setup, don’t you think?”

        This is an issue, I agree. And it can be for any doctor. How do we know how much treatment is correct? There are case studies where individual patients must be retreated or receive ceftriaxone later because doxycycline didn’t cut it (preliminary research from Europe aside). Which is why I advocate for research into development of a test which can distinguish between current, active infection and past infection. This is where I think some of the NIH-NIAID’s grant money should go… if they have any. Because they don’t, Lyme disease advocacy groups have to try to get the money for such research. Either that, or independent researchers have to be willing to take this sort of task on and crowdfund their project on websites such as kickstarter or rocketfund #SciFund.

        See what kind of society we have become, because of what we value and what the government decides are funding priorities? (No, don’t get me started. We will only go way too far off topic.)

      2. Camp Other says:

        Weing, sorry – minor correction/addition to my previous comment:

        “About the only thing I’ve found that potentially is a clear indicator could be the processing of additional bands on the western blot or increasing number of bands, according to Johnson et al at the CDC.”

        That should have read instead:

        “About the only thing I’ve found that potentially is a clear indicator could be the processing of additional bands on the western blot or increasing INTENSITY of EXISTING bands, according to Johnson et al at the CDC.”

        Mea culpa.

  57. carsthatfly “No. What I have seen, as in personally witnessed, is people who were given prescriptions to cope with symptoms while the underlying cause of the symptoms went untreated. Symptoms continue to worsen and the dosage is typically increased.”

    What I have witnessed is that autoimmune diseases like SLE, rheumatoid arthritis and have lower mortality and disability rates since the advent of the use of DMARDs and immune suppressing medications like steroids. I have also observed and had online discussions with folks with undifferentiated connective tissue disease (UCTD) and SLE who’s symptoms are much improved or in remission with the use of these medications and also those who experienced mild to severe, even life threatening flares when the medications were stopped. In one case, a college age woman (daughter of a forum member) died from SLE cardiac involvement when she stopped her medication based on the advice of an alternative practitioner who claimed they could cure Lupus by treating the underlying causes.

    I am very, very leery of any medical practitioner that recommends unproven or experimental treatments and doesn’t acknowledge these kinds of risks.

    Although, I have gathered from my reading, that if a patient’s symptoms and/or lab results don’t improve with DMARD* and/or steroids, that is a good time to look for another explanation, especially in something as uncertain as UCTD. Some auto-immune diseases are tricky and tests/diagnostic criteria aren’t always clear cut or certain. As to alternative to consider it seems that would be really variable, based on the individual’s signs and symptoms.

    ——

    As to Fibro – my experience is mostly limited to folks with UCTD, SLE AND Fibro, some of them seem to experience some relief with the gabapentin or other similar medications, some not. I can’t say I’ve read up much on those, since it hasn’t been recommended to me.

    I’m not under the impression that going without those medications could be life threatening…seems more like a personal decision balancing the side effects and risks of medication with the benefits that the patient experiences….but, once again, I haven’t really looked into it.

    *DMARD’s like Plaquenil take 2-6 months to reach full effectiveness, though.

    1. Whencarsfly says:

      Do tell where you have “seen” this? Are you a doctor, a patient or just read a lot of case studies and blogs? Do you have firsthand experience if these cases to which you refer?

      1. Whencarsfly – a patient and have online discussion in AI groups. Are you questioning that folks with SLE diagnoses can die when steroid treatment is stopped? I hope you’re not doing that, because that’s just outright denial.

  58. Also @ carsthatfly – addendum to my comment this morning (which is in moderation, hope this one doesn’t appear before that one) Maybe I should add, that I believe it’s well established that many auto-immune diseases make people MORE prone to infections.

    So, I would also be leery of a medical practitioner treating AI patients, particularly those on steroids, who were not taking established symptoms of infection seriously.

    1. Whencarsfly says:

      Now please Google that evidence and post it here.

  59. Infection rates in an auto-immune disorder like SLE? Try these results.

    Or survival rate in SLE? Here’s the google search or here’s an article

    I will be amazed if those links work the first try.

  60. woohoo! – I can write a html link (sad celebration for a former web designer).

  61. vadaisy “She’s just a lot smarter than the average patient.”

    Thanks, but I’m actually not very smart. I do have the advantage of having experienced (unsuccessful) infertility diagnoses and treatment and successfully adopted two children. Unfortunately, there are professional in both of those fields who either knowingly take advantage of vulnerable people or unknowingly cause harm through not meticulously adhering to protocol and ethics.

    Also my second child who was born with cleft lip and palate (was adopted through a special needs program) and I have been lucky to work with some really excellent pediatric medical professionals and educational staff. Unfortunately also some really NOT excellent educational staff, but working with the good professionals has given me some insight as to how doing medicine (and education) well looks.

    I’m just really trying to bring whatever skills I’ve learned from those experiences to help me figure out how to best manage my current symptoms (as they come and go). But, really I’ve come to the conclusion that I completely SUCK as a patient. I have incredibly poor communication skills and well, the list goes on. So I’ve pretty much accepted that I’m going to screw-up and I’ll just cross that bridge when I come to it. Until then, I’m just to manage and not dwell on the medical stuff any more than I need to.

    This ‘search for the Truth’ idea would make me miserable (mentally, but also probably physically, as well, considering all the test I’d have to undergo to diagnoses or rule out various conditions) Finding one overriding Truth is just so unlikely. I just look for the ‘most likely workable solution with a reasonable risk/benefit profile and try to leave it at that.

    Right now I’m dwelling on all this stuff more than I feel good about, so I’ll just mosey along (and give the poor moderators a break :))

  62. WLU – “Oh snap.”

    I’m nonplussed.

    1. WilliamLawrenceUtridge says:

      Double-snap, you are on fire today! I saw what you did there.

  63. janetS says:

    It is known that borrelia infections are chronic (exist in biofilms, as photographed using atomic force microscopy (AFM). By definition, bilfilm infections are chronic and it has been proven, SCIENTIFICALLY, that borrelia spirochetes form biofilms.

    This is a very complex disease, or diseases. It suppresses the immune system (Outter Surface Protein A; OspA), activating opportunistic infections such as EBV.

    The science is there, and we will prevail even as we wade through huge piles of crap naysayers dump on us.

    1. WilliamLawrenceUtridge says:

      Oy vay, Epstein-Barr virus? There’s quite a venn diagram of questionable infectious entities building up.

  64. Camp Other says:

    vadaisy said:

    “@CampOther, unlike yourself, I am not qualified to offer an expert review of the findings of the Infectious Disease Society of America’s official opinion on the diagnosis and treatment of Lyme or any other infectious disease. I will defer to their opinion and trust the CDC and other experts. It does appear that you are of the opinion that there is no PTLDS, only a chronic and persistent infection.”

    Nowhere have I made that claim, either here or on my own blog. I am not sure what causes persisting symptoms in all patients who have been bitten by a tick, contract Lyme disease, and are treated.

    I’ve stated that I think some people may have to have longer or additional antibiotic treatment, and that some people may go on to a develop an autoimmune condition due to Lyme disease – even after the infection is over. I’ve also stated that some people may need additional treatment and then end up with an autoimmune condition anyway.

    I am not in favor of open-ended antibiotic treatment, it concerns me. I would like to see a test get developed which distinguishes between past infection and active infection in patients.

    The two main hypotheses on the table for patients’ persisting symptoms have to do with molecular mimicry/autoimmunity and persistent infection. (There are others, but these are less frequently discussed in the media and more frequently discussed at scientific conferences.)

    Researchers need to sort this out, and I am following this part of the story carefully.

    If it turns out that persisting symptoms are caused by an autoimmune condition or one which causes dysregulation, this will require new treatment research.

    If it turns out persisting symptoms are caused by slowly dividing, metabolically active persister cells, then a different treatment will need to be developed for this as well, and may lend some creedence to why additional antibiotics don’t help some people with persisting symptoms – if the spirochetes are antibiotic tolerant, they aren’t going anywhere, no matter how much doxy or ceftriaxone you give someone.

    No, you would have to find a different antibiotic to use – or an antibiotic plus a metabolite which activates the persister cells so they can be affected.

    I do not know the answer here either way. Researchers must do the work required in order to find the answer. Too bad the NIH-NIAID doesn’t have more funding – those in Lyme disease research could use it, and I could use answers.

    In terms of patients, I don’t think those who are bitten by a tick are a heterogenous population. By nature, I don’t think they can be, anyway. Patients who contract Lyme disease from a tick bite have different genetic backgrounds, get infected with different strains/genospecies of Borrelia with different RST types and dissemination rates and pathogenicity; get treated at different time points relative to bite and are sometimes co-infected with other pathogens which may have a synergistic effect and contribute to complications and development of less positive outcomes after treatment.

    “Kindly explain more in response to the subject of this post. Do you agree with all of the treatments mentioned in the Huffington Post story? Why aren’t any of the supporters of CLD answering the questions about NAET and chelation? How does NAET kill off a spirochete? Is it supposed to be like RIFE, but from human energy? How do you know when the disease has been adequately treated and what does the difference in the energy fields feel like? Educate me.”

    No. I don’t. And I can’t tell you why no one else is answering these questions. Ask the forum at large?

    NAET? There’s no evidence to support its use. Chelation? That can be very dangerous. Also, it’s not evidence based, either. I wouldn’t use it to treat Lyme disease. Chelation has about only one really good application, and that’s for lead poisoning. Rife? Another treatment which has no evidence to back its claims, and people pay thousands of dollars for it. Pointless to pay that much, by the way, when they can experiment more safely with a kit you can use to turn your PC into a frequency generator for under $100. Either way, there is no evidence it works.

    I can educate you on pseudoscience, but to be frank, I’d really rather not spend my time on it. Anyway, I am quite certain that folks here on science-based medicine can teach you all about pseudoscience; they’re been studying it for years. It is their topic du jour.

    It’s more important, I think, to solve the problem of what really is causing patients’ persisting symptoms – including my own – and get back to the life (what is left of it ) I had before all this crap happened to me and move on.

  65. davdoodles says:

    Open Letter to Our Lyme-Literate Visitors:

    I hope you’re right, but so far I doubt it. Your methods are dubious, and smack of wrong-headedness. Scientists fight scientific skepticism with science, not with appeals to authority.

    “Carsthatfly”, your near-constant dismissal of criticism by smarmily assuming everyone here are young students with sooo much left to learn, does not advance your claims. Your odd allusions to your incomparable understanding of “calculus” and “civil engineering” do not magically excuse you from sharting out wet clots of haughty, irrelevant gibberish in lieu of science in this potentially important area of medical science.

    Nonetheless, if you believe you’re right, all the more reason to concentrate of the science. Replicable results, describing meaningful disease pathways. Good old-fashioned medical research.

    The part that your “Melissa Bell (FALDA)” seems to have entirely misunderstood about the example that she herself raised, Warren and Marshall’s work on H.Pylori.

    Never noticed Warren or Marshall trolling science websites claiming to be Gallileo-the-butthurt. I guess they understood how this stuff works, and were too were too busy doing solid medical research.

    They certainly had their fair share of detractors, scoffs and, in some cases, monied resistance. Just like you all claim to have.

    But that didn’t make them right. And being scoffed at by the scientific community doesn’t make you right either.

    Warren and Marshall used science, and ethical medical research, to make their case. Their research and results were repeated all over the world, and they did not engage in quackery, snake-oil sales, whiny baby-tears, trolling science websites or other nonsensical bullsh*t in lieu of science and research.

    Trolling science websites shouting “big pharma conspiracy” and “naysayer” and “people thought MS was psychosomatic in the 1800s” just makes you all look like classic Galileo-gambit pseudoscience cranks.

    Get on with your science, and come back when you’re done.
    .

    1. Melissa Bell (FLDA) says:

      I have cited ample authority to illustrate that the matter of CLD is unsettled. As such, a one-size fits all “guideline” that is mandated by the CDC/IDSA is wholly inappropriate. Doctors should be permitted to exercise clinical judgment (indeed, the CDC concedes this point).

      This is not a matter of conspiracy, but the reality of having a helpless, innocent child who nearly lost his life to this horrific, poorly understood and vastly underfunded disease.

      You clearly have no empathy for those suffering from Lyme Disease, even if they are innocent children who are robbed of their childhoods. You certainly have the prerogative to blindly follow the CDC/IDSA. But ask yourself, do you trust the CDC that continued to steadfastly maintain that there were only on average 30,000 cases per year as of last month, or alternatively the CDC that now admits that they knowingly withheld information showing that the actual number of cases is exponentially higher at a conservative estimate of 300,000 cases per year.

      1. “I have cited ample authority to illustrate that the matter of CLD is unsettled.”

        You don’t show very much ability to cite well or accuracy, subject knowledge or without hyperbole. Not as useful, I’m afraid.

      2. vadaisy says:

        What a load of trash. The CDC did not admit that they “knowingly withheld information”. Your Lyme disease association is deceiving the public. The guilt on your conscience should weigh heavy of robbing innocent people of their health and finances by directing them to purveyors of SCAM.

        1. Melissa Bell (FLDA) says:

          Dr. Paul Mead, chief of epidemiology and surveillance for CDC’s Lyme Disease program, states that “scientists have known since the 1990s the number of cases was underreported by three- to 12-fold but did not have a good handle on exactly how greatly until now.” Over the past 20+ years, doctors, patients and parents were misled into thinking that Lyme Disease was “rare” with only 20-30 thousand cases nationwide annually, when the new estimate is now 300,000 cases per year.

          Wake up and face reality.

          1. weing says:

            No, we weren’t misled. The CDC knew that the reported cases were just the tip of the iceberg and now they have a more accurate estimate. The reported cases were 20-30 thousand per year. The actual cases are 10 times as much. This is similar to the case with autism where the reported cases were much lower in the past, compared to the actual cases that we are now able to diagnose.

            None of this means that chronic Lyme, as you imagine it, exists.

          2. WilliamLawrenceUtridge says:

            Basically the same comment as weing – the CDC is concerned over real Lyme disease being under-reported. This under-reporting doesn’t justify CLD. Post-Lyme disease syndrome has a distinct symptom set that doesn’t line up to the CLD one, unless you muddy the two.

      3. WilliamLawrenceUtridge says:

        If I empathetically deliver a useless or harmful treatment, I am, in a very kindly way, harming a patient. CAM proponents throw around and wave mightily the term “empathy” as a justification for dangerous treatments, useless and expensive interventions, and often a paranoid rhetoric of conspiracy and falsehood that urges patients to ignore their real doctors in favour of gurus and charismatic, often empathetic, usually expensive charlatans.

        I see similar parallels with CLD advocacy groups and LLMDs.

        I have empathy for those who suffer from what they think to be chronic Lyme disease, I just don’t think the hypothesis of “invisible, undetectable infections” justifies the manufacture of antibiotic-resistant bacteria in people with holes in their skin (and an antibiotic-development program that is slowing while antibiotic-resistant bacteria are on the rise).

        Your appeal to emotional blackmail makes your case less convincing than your science. Real Lyme disease went from novel pathogen to recognized clinical entity relatively quickly. Please put your efforts into advocating for the best scientific test. You might also want to think about your constant goalpost-moving. I’m sure you were thrilled when they announced clinical trials for chronic Lyme disease, and your disparagement of them began only once the results failed to support your pre-existing hypothesis.

        1. Melissa Bell (FLDA) says:

          Lyme advocates have been seeking a more accurate tests for decades. Unfortunately, due in large part to the gross underreporting of Lyme Disease cases for decades, Lyme Disease has not received adequate funding. You are welcome to consider funding for LD to other illnesses on the CDC website. We have only been part of the Lyme nightmare since our son was diagnosed in 2012.

          Many patients with “chronic Lyme” also have other confirmed bacterial infections. Would you deny them antibiotic treatment for those infections because they already received their one size fits all 30 day allotment recommended by the IDSA to treat LD? You seem to only consider Lyme as an isolated infection, when most times, this is not the case for those with persistent symptoms.

          1. WilliamLawrenceUtridge says:

            In the absence of a more accurate test, wouldn’t you say claiming a definitive etiology is premature? Wouldn’t you say your certainty is unwarranted? And if Lyme is as prevalent as is claimed by CLD-promoters, and apparently the CDC, doesn’t that rather suggest that it is in fact a rather mild disease?

            Many patients with “chronic Lyme” also have other confirmed bacterial infections. Would you deny them antibiotic treatment for those infections because they already received their one size fits all 30 day allotment recommended by the IDSA to treat LD?

            Antibiotics are specific. Treating them with Lyme-specific antibiotics wouldn’t cure them of any bacteria that do not respond to said antibiotics (including antibiotic-resistant Lyme, say, created by “pulsing” antibiotics over the course of months). I am advocating a rational, science-based treatment of Lyme disease. We seem to have that. What is lacking is a comparable treatment, or even explanation, for CLD (assuming it’s something other than somatoform).

            You seem to only consider Lyme as an isolated infection, when most times, this is not the case for those with persistent symptoms.

            Such an assertion can surely be justified through reference to the scientific literature. Are you assuming multiple infections? Uniform infections in all with CLD? That rather fails Occam’s razor. Unless you are assuming some interaction between Lyme infection, other infectious diseases and some hitherto-unrecognized feature of the biochemical pathways of the immune system. I can only, once again, suggest that your speculations are not the same thing as proof (and don’t justify essentially destroying the utility of antibiotics).

  66. janetS says:

    DaveDoodles, darling, with regards to ie: “quackery, snake-oil sales, whiny baby-tears, trolling science websites or other nonsensical bullsh*t “:

    Bullying won’t make you correct any more than it’ll increase your IQ. People who engage in name-calling when arguing have lost. Lost the argument and their credibility.

    1. davdoodles says:

      Thanks for the logic lesson, um, “darling”…

      Now, shoo.

  67. davdoodles says:

    “You clearly have no empathy for those suffering from Lyme Disease, even if they are innocent children who are robbed of their childhoods.”

    You clearly could have no idea what I do or don’t “empathise” with. You certainly make a habit of running, headlong and heedless, to your glittering, self-serving, conclusions, don’t you?

    And If I lack empathy, it’s for the vultures that circle the diseased. Quite possibly, the very creatures we are discussing here.

    Anyway, as I know you are smart enough to understand, the relevance of “empathy” here is precisely zero, so I don’t see it as necessary to introduce into this discussion.

    What you might not have realised though, is that “empathy” is quite possibly counter-productive to good science, as it can cloud judgement. Not looking at you specifically, but certainly in your general direction.

    Speaking, as we now are, of empathy, you might recall that I wrote upthread, to you:

    “I assume your approach to MS, were you alive in the early 1800s …[would be to inflict] your wretched patients with leaches… all the while cursing Charcot for his lack of progress and refusal to pearl-clutch in sympathy.”

    I love quoting myself. See the last bit? That wasn’t even a trap, yet you still managed to plummet, limbs akimbo, right into it.

    Finally, that word “wretched” in there might be a clue to where my empathies, if any, lie.

    Now, go do science, elsewhere.
    .

    1. Melissa Bell (FLDA) says:

      I along with other posters have spoon fed you NIH studies, yet you would rather adhere to your one-sided IDSA rhetoric. If you are so dedicated to science, perhaps you should actually read the science, without clouded judgments and preconceptions.

      1. vadaisy says:

        What you have “spoon fed” us the biased, misrepresented, cherry-picked information that has unfortunately been ingrained into your head by the Lyme disease associations. They are cloning little associations of desperate and ill patients and non-thinkers who will repeat their rhetoric and protect their LLMDs. Well done.

        1. Melissa Bell (FLDA) says:

          NIH studies showing persistent infection. Read them. It pays to have an open mind and make your own conclusions, which is precisely what I have done. I suppose it is a good thing they don’t have ticks in the elitist ivory tower you live in.

          1. vadaisy says:

            If you are referring to the Embers study, then don’t forget to mention this statement by Embers,

            It is not our intent to present data in opposition of current antibiotic treatment regimens for humans, but rather to report what we believe to be objective, well-performed experiments on antibiotic efficacy in a nonhuman primate model. These data are by no means a referendum on long-term antibiotic therapy, nor should they serve to oppose current IDSA guidelines for the treatment of Lyme disease. From the medical standpoint, these results may or may not warrant testing of additional treatments or regimens. This depends heavily on the results of further inquiry as to the duration of persistence, the viability and phenotype of persistent organisms, and the answer to the key question of whether persisters are pathogenic. Current practices could only be challenged by solid proof of better treatment options; these are currently not available.

            In regards to previous comments about researchers being underfunded, in reference to the statement made by Barthold I presume, anyone can check NIH Project Reporter and see that Stephen Barthold has received funding most every year. That’s more than some of the Infectious Disease researchers who do similar research.

  68. JanetS “Bullying won’t make you correct any more than it’ll increase your IQ. People who engage in name-calling when arguing have lost. Lost the argument and their credibility.”

    Actually, you have to define winning in order for this to be a logical statement.

    If you define winning as convincing to the most people or selling the most product…it’s possible that your correct (maybe not, you’d have to do polling or track product sales).

    But if you define winning as ‘having correctly stated a fact’ which, to me, is more important when discussing how to treat a person with an illness – then your logic statement is incorrect.

    In other words, By reputation, Newton was a right bast#+d, but that does not mean that he was not correct in his theories of gravitational pull, even if he arguing with the sweetest, politest person in the world who thought differently.

  69. Whencarsfly says:

    I’m curious then…what do you guys recommend for a patient with CLD who’s gone months or longer without dx or tx, based on existing science based medicine? No need to pontificate, it’s a simple question from a simple minded person so you can respond accordingly.

    1. WilliamLawrenceUtridge says:

      I’m not a doctor, I don’t pretend to be one, I recommend following the CDC recommendations for confirmed Lyme disease.

      Also, I’ve corrected your sentence below:

      I’m curious then…what do you guys recommend for a patient who assumes they have, or has self-diagnosed off the internet, or has paid a self-described “Lyme-literate doctor” to tell them they have been diagnosed with CLD who’s gone months or longer without objectivedx (because there is no objective way to separate out CLD patients from everyone else) or tx, based on existing science based medicine?

      Now, of course this doesn’t apply to the 10-20% of actual Lyme patients who develop lingering fatigue, arthralgia or myalgia and are diagnosed with post-treatment Lyme disease syndrome, which has no relation to the “chronic Lyme disease” claimed by people living in New Mexico with no exposure or indication of Lyme infection. Certainly I would never advocate long-term treatment with antibiotics, because breeding antibiotic-resistant bacteria is a terrible idea (for society in general, and in particular for patients who have a constant hole in their skin to deliver these antibiotics).

  70. Camp Other says:

    WilliamLawrenceUtridge says:

    “Now, of course this doesn’t apply to the 10-20% of actual Lyme patients who develop lingering fatigue, arthralgia or myalgia and are diagnosed with post-treatment Lyme disease syndrome, which has no relation to the “chronic Lyme disease” claimed by people living in New Mexico with no exposure or indication of Lyme infection. Certainly I would never advocate long-term treatment with antibiotics, because breeding antibiotic-resistant bacteria is a terrible idea (for society in general, and in particular for patients who have a constant hole in their skin to deliver these antibiotics).”

    Yes, and how does anyone distinguish the 10-20% of actual Lyme disease patients who develop these symptoms versus others when it comes to the internet?

    If the CDC’s estimate of 300,000 cases annually reliably scale those 10-20%, then at 15%, 45,000 patients a year develop persisting symptoms post-initial treatment. That is a lot of people with persisting symptoms, who experience them from anywhere from months to years.

    Some may be online. Some may not be. I don’t know.

    My observation has been that the terms “post Lyme disease syndrome” and “chronic Lyme disease” have become synonymous on Google when anyone goes to look up information on it – especially in seeking support. (For an example, Google “post Lyme disease support”, and see what most of the results are; click through a few pages.)

    When someone here tells me I’m confusing “chronic Lyme disease” with “post Lyme disease syndrome”, it’s not that I’m confusing the two. It’s that to some degree the terms have become synonymous within the patient community. Those who support a persisting infection model use “chronic Lyme disease” mostly – and those patients who start off using “Post Lyme disease” are often told by others that the term is a misnomer for their own condition.

    I’ve changed in my thinking about this over the past couple of years and now personally prefer “post-treatment Lyme disease” but it has never really caught on. People seem to not know what I’m talking about when I use it, but automatically understand the other two terms if I use them and they will opt to use one or the other one, depending on which mode of causation they support.

    My head hurts.

    1. WilliamLawrenceUtridge says:

      If “post Lyme disease syndrome” and “chronic Lyme disease” have become synonymous, that’s a problem. One is a valid, recognized conditions with limited, mild and self-limiting subjective symptoms that occur in the presence of a history of infection, the other is…questionable, encompasses a number of vague, nonspecific symtpoms and no history of infection, and probably trying to piggy-back on the social capital and scientific recognition of the first.

      I don’t have a problem with post Lyme disease syndrome (post Lyme disease symptoms lasting longer than 6 months). It’s CLD I don’t believe has anything to do with Lyme ticks or bacteria.

      1. Camp Other says:

        WilliamLawrenceUtridge says:

        “If “post Lyme disease syndrome” and “chronic Lyme disease” have become synonymous, that’s a problem.”

        It has to some degree. It has online when it comes to patient support groups. Professional medical web sites will often make a distinction. Some medical websites will state that chronic Lyme disease really means Post Lyme disease.

        From the NIH-NIAID current page on chronic Lyme disease:

        “The term “chronic Lyme disease” (CLD) is very confusing, as it has been used to describe people with different illnesses. While the term is sometimes used to describe illness in patients with Lyme disease, in many occasions it has been used to describe symptoms in people who have no evidence of a current or past infection with B. burgdorferi (Infect Dis Clin N Am 22:341-60, 2008). In other cases, “CLD” is used in patients who have non-specific symptoms (like fatigue and pain) after treatment for Lyme disease, but who have no evidence of active infection with B. burgdorferi. Physicians sometimes describe these patients as having post-Lyme disease syndrome (PLDS).

        Because of the confusion in how the term CLD is employed, experts in this field do not support its use (New Engl J Med 357:1422-30, 2008).”

        source: http://www.niaid.nih.gov/topics/lymedisease/understanding/pages/chronic.aspx

        If you’re confused, it’s not surprising. Many people are. I’ve heard some doctors use terms interchangeably, too.

        Worldwide the usage isn’t even the same. In Europe, “chronic Lyme disease” has meant “late stage Lyme disease” to many medical professionals; it has been a mainstream concept there though EUCALB and other organizations have been trying to change terminology. “Chronic Lyme disease” is the term still used in Lyme disease abstracts and publications in a number of cases.

        “One is a valid, recognized conditions with limited, mild and self-limiting subjective symptoms that occur in the presence of a history of infection,”

        Why do you think it is always a mild condition? It can have a range of severity depending on the patient. From documentation from the Klempner clinical trials at the NIH-NIAID:

        ” “Although we still have much to learn,” says Dr. Klempner, “we know much more about chronic Lyme disease now than we did when these studies began.” Besides the information obtained about the efficacy of intensive antibiotic treatment, the investigators found that the impact of Lyme disease on physical health was at least equal to the disability of patients with congestive heart failure and osteoarthritis. Some patients were also found to have cognitive impairment.”

        source: http://www.nih.gov/news/pr/jun2001/niaid-12.htm

        Even then, CLD was the term used in 2001. Using PLDS became a more recent shift in the past several years. But some people still use CLD.

        Post-treatment Lyme disease makes more sense to me because it states the nature of what happens to patients without a clear theory of causation. But that’s me.

        “the other is…questionable, encompasses a number of vague, nonspecific symtpoms and no history of infection, and probably trying to piggy-back on the social capital and scientific recognition of the first.”

        And here is where one can find there is no clear delineation. There are people who have a history of a tick bite, have positive Lyme disease serology from a standard certified lab (Quest, Labcorp) who get treated, go on to experience persistent symptoms and decide to treat with additional antibiotics. One doctor may say they have developed fibromyalgia or chronic fatigue syndrome, possibly triggered by infection; another doctor or something they read online may say they now have chronic Lyme disease.

        1. Camp Other says:

          ““the other is…questionable, encompasses a number of vague, nonspecific symtpoms and no history of infection, and probably trying to piggy-back on the social capital and scientific recognition of the first.”

          To add: Historically, chronic Lyme disease came first. Post Lyme disease came later. The usage of these terminologies have changed to some degree over time.

        2. WilliamLawrenceUtridge says:

          Why do you think it is always a mild condition?

          That was a borderline direct quote from the NEJM Dr. Hall included in her post:

          In this article, we refer to these usually mild and
          self-limiting subjective symptoms as “post–Lyme disease symptoms,” and if they last longer than 6 months, we call them “post–Lyme disease syndrome … The focus of this review, however, is not the objective manifestations of late Lyme disease but rather the imprecisely defined condition referred to as “chronic Lyme disease.” This term is used by a small number of practitioners (often self-designated as “Lyme-literate physicians”) to describe patients whom they believe have persistent B. burgdorferi infection, a condition they suggest requires long-term antibiotic treatment and may even be incurable. Although chronic Lyme disease clearly encompasses post–Lyme disease syndrome, it also includes a broad array of illnesses or
          symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to B. burgdorferi infection. Chronic Lyme disease is used in North America and increasingly in Europe as a diagnosis for patients with persistent pain, neurocognitive symptoms, fatigue, or all of these symptoms, with or without clinical or serologic evidence of previous early or late Lyme disease.

          Deferring to the experts, late Lyme disease and post-Lyme disease syndrome exist, and are specific. CLD is the quackery.

          There are people who have a history of a tick bite, have positive Lyme disease serology from a standard certified lab (Quest, Labcorp) who get treated, go on to experience persistent symptoms and decide to treat with additional antibiotics. One doctor may say they have developed fibromyalgia or chronic fatigue syndrome, possibly triggered by infection; another doctor or something they read online may say they now have chronic Lyme disease

          …and the problem there is two-fold:
          1) Treatment with antibiotics is irrational
          2) Fibromyalgia, CFS and CLD are all medically unexplained symtpoms (add to that Gulf War syndrome and multiple chemical sensitivity), none of which have a clear physical cause, all of which have strong patient advocacy groups demanding one. They are all basically wastebasket diagnoses that can’t be distinguished from each other and in my mind all have at least a subset of patients whose symptoms are at least in part psychogenic. It’s five different terms for what is at least partly somatoform disorder, the only difference being the insistence on what is really causing it.

          1. Whencarsfly says:

            Comparing Chronic Lyme disease to Chronic Fatigue Syndrome, Fibromyalgia and Gulf War Syndrome is an apples to oranges comparison.

            I agree that advocate groups lumping these illnesses/symptoms together are doing a disservice.

          2. WilliamLawrenceUtridge says:

            Why? Because you don’t believe it, because you believe it trivializes the suffering of patients? Because you are convinced that CLD is caused by Lyme infection, even though there’s no objective that this is the case? Because your personal incredulity doesn’t let you make this comparison? What are the symptoms of chronic Lyme disease? Fatigue, pain, bowel problems, difficulty concentrating, headache? Are there more female patients than male? Because all of those are characteristics of CFS, multiple chemical sensitivity, Gulf War syndrome, somatoform disorders and fibromyalgia, and I’m guessing – CLD. The differences are the alleged etiology. The similarities are everything else.

            It may very well be that your pursuit of the Lyme tick as an etiological agent is wrong. That the Lyme tick and Bb has nothing to do with the symptoms LLMDs diagnose as chronic Lyme. If you refuse to entertain this possibility, you aren’t doing science and you should stop bothering or pretending to seek a scientific explanation.

            You may not like the fact that all these syndromes may be different words for the same thing – but that doesn’t mean it’s not true. Further research may discover something novel, or it may be chasing the end of a rainbow that keeps retreating the further you run.

          3. Camp Other says:

            WilliamLawrenceUtridge says:

            “Deferring to the experts, late Lyme disease and post-Lyme disease syndrome exist, and are specific. CLD is the quackery.”

            Okay, I get your position now. Though you do support the existence of “post-Lyme disease syndrome” and consider it a scientifically valid condition, you deny the existence of “chronic Lyme disease” where “chronic Lyme disease” is specifically described in Dr. Hall’s quoted NEJM article ” [...] a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to B. burgdorferi infection.”

            The problem with the shift in definition is that “chronic Lyme disease” can also be equivalent to what scientists have called “post Lyme disease syndrome” or “post-treatment Lyme disease (syndrome)”. Also quoting from the cited passage of the same NEJM article:

            “Although chronic Lyme disease clearly encompasses post–Lyme disease syndrome [...]”

            In the Klempner clinical trials in 2001, the researcher himself used “chronic Lyme disease” rather than “post Lyme disease syndrome” – although today, most researchers and doctors would call what was studied then to be “post Lyme disease syndrome”:

            ” “Although we still have much to learn,” says Dr. Klempner, “we know much more about chronic Lyme disease now than we did when these studies began.” Besides the information obtained about the efficacy of intensive antibiotic treatment, the investigators found that the impact of Lyme disease on physical health was at least equal to the disability of patients with congestive heart failure and osteoarthritis. Some patients were also found to have cognitive impairment.”

            source: http://www.nih.gov/news/pr/jun2001/niaid-12.htm

            When a researcher states that those enrolled in the trials had conditions equal to the impact and disability of congestive heart failure and osteroarthritis, is that considered mild?

            “…and the problem there is two-fold:
            1) Treatment with antibiotics is irrational
            2) Fibromyalgia, CFS and CLD are all medically unexplained symtpoms (add to that Gulf War syndrome and multiple chemical sensitivity), none of which have a clear physical cause, all of which have strong patient advocacy groups demanding one”

            Treatment with antibiotics is irrational if the patient doesn’t have an infection, and I would agree with that statement on principle. I also agree that a number of conditions don’t have a clear cause, and they require more investigation.

            But the issue I somewhat clumsily raised in my example is that some people develop what you would call “post (treatment) Lyme disease” when they may get a diagnosis of chronic fatigue syndrome or fibromyalgia from one doctor or “chronic Lyme disease” from another.

            People who have bonafide cases of Lyme disease and develop persisting symptoms may not get diagnosed with post Lyme disease syndrome even though that is what they have by your definition, and they go on to take additional antibiotics to treat their persisting symptoms.

            In other words: Patients who state they have chronic Lyme disease can have a condition which matches the definition of post Lyme disease which you and most of the medical profession are applying.

  71. Camp Other says:

    Apropos of the style and quality of communication which some people engage in over the chronic Lyme/post Lyme/post-treatment Lyme alphabet soup debate, I’d like to share something I wrote as a rant a while back:

    The Wall Of Polarization:
    http://campother.blogspot.com/2011/05/repost-lyme-disease-rant-wall-of.html

  72. Nashira says:

    I am trying to think of how to phrase this in a reasonably polite fashion. I keep parsing your comments as being highly similar to the appeals to moderation of the less openly anti-vaccine folks out there. You know, they’re not like those other people who think vaccines explode your brain into melted goo, but don’t you think there’s just too many vaccines too soon nowadays and we need more research before we can be sure that’s safe?

    Realizing, of course, that there’s never enough research to encourage these people to change their minds. They have already decided on what the truth is (their symptoms MUST be chronic lyme disease/vaccines are too dangerous), and that anyone who disagrees with them is a giant meaniehead. So they demand more and more research only to dismiss it when it doesn’t say what they want, all the while patting themselves on the back for being so scientifically minded and smarter and kinder than the mean people who picked a side. It’s really really frustrating.

    1. Whencarsfly says:

      @nashira – Research the Lymerix vaccine and report back to us on that. The correct is not that it “was pulled from the market due to lack of demand”. Their was apparently sufficient “research” to allow it to be pushed to market with disastrous consequences.

      1. WilliamLawrenceUtridge says:

        What, you mean this vaccine? DuPont was also sued (and bankrupted) for the alleged allergenicity of their breast implants. Law suits are not the same thing as scientific proof. It looks like the Lyme crowd managed to get the vaccine pulled on the basis of “unfounded public fears [that placed] pressures on vaccine developers that [went] beyond reasonable safety considerations”. It’s almost as if the scientifically-illiterate were unwilling to look beyond their own experience, or really convictions, to consider any dissenting information no matter how scientifically valid.

        It’s almost as if you don’t care what might be true, only what confirms your pre-existing beliefs.

      2. Nashira says:

        Hmmm, I thought I had directed that comment @CampOther, oh well.

        Scientific proof and legal proof exist in two entirely separate worlds. I am no more swayed by a court finding that a vaccine is totes dangerous than I am when the Ancient Aliens guy says something would be sufficient legal proof that aliens are real.

        Plus I would frankly love to have a Lyme vaccine available. A) Vaccines are *awesome*. B) My brother lives in an endemic region and camps a lot; he is vigilant about ticks and bullseye rashes, but I wish he had some level of immunity. Mom would worry less.

        1. Camp Other says:

          Which comment – #76? Please confirm.

        2. whencarsfly says:

          There are constantly new strains of tick-borne diseases being discovered and new evidence in areas deemed to be non-endemic. How is it possible to develop a vaccine that would provide adequate protection with any confidence?

          A study released in June 2013 by UNF proved the existence of two Borrelia species found in the lone star tick in the Southeast.

          “These two Lyme disease species, Borrelia americana and Borrelia andersonii, were found in symptomatic patients living in the Southeastern United States. The commonly found lone star tick, formerly believed by many to be incapable of transmitting Lyme disease, was implicated in some of these cases.”

          Read their press release here: http://www.unf.edu/publicrelations/media_relations/press/2013/UNF_Professor_Discovers_Two_Lyme_Bacterial_Species_Can_Infect_Humans.aspx

          There is no accounting of the patients who have been denied, or significantly delayed, life saving treatment in parts of the country declared to be “non-endemic”. Until the requirements to be a reportable case are uniform for “non-endemic” areas AND “endemic” areas this will likely be unchanged, even with this type of new evidence.

    2. Camp Other says:

      Re-reading your comment here, Nashira, without your further confirmation below I think it was directed towards me – and if not, I apologize. In the future, placing “@CampOther” at the top of your comment would help – thanks.

      Nashira says:

      “I am trying to think of how to phrase this in a reasonably polite fashion I keep parsing your comments as being highly similar to the appeals to moderation of the less openly anti-vaccine folks out there. You know, they’re not like those other people who think vaccines explode your brain into melted goo, but don’t you think there’s just too many vaccines too soon nowadays and we need more research before we can be sure that’s safe?”

      I can see where one could get that impression, but I don’t think that’s how I’d characterize my position. (And not wanting to get too far into the issue of the anti-vax crowd, as it going off-topic – but I do think vaccines are life saving and find the anti-vax position to be dangerous. There are a few individuals who should avoid certain vaccines due to allergies and immunosuppressed conditions (ie patients on chemotherapy are often asked to avoid live vaccines) but most people should get them for herd protection.)

      The problem is that interpretation of my position gets muddied by the fact that “chronic Lyme disease” and “post (treatment) Lyme disease” have been used interchangeably and also that when I first confronted the issue of persisting symptoms in patients who have contracted Lyme disease and were treated, I had one position and ended with another over time.

      Maybe I can provide some clarity here:

      It’s taken me a while to understand that many people think of “chronic Lyme disease” as a condition which has vague set of symptoms and people who have it are thought to have had NO evidence of previous infection with Borrelia burgdorferi sensu lato. For the longest time, I thought that “post Lyme disease syndrome” is another term for “chronic Lyme disease”, and based on Dr. Hall’s NEJM excerpt, that is indeed the case.

      When I’m talking about “chronic Lyme disease”, the definition I am using is in patients who DO have evidence of having had a tick bite and/or positive Lyme disease serology and history of exposure to ticks plus a clinical presentation which meets the definition of Lyme disease, who go on to get treated under existing guidelines, and go on to have persisting symptoms. (I am not talking about people who have no history of exposure to ticks and no evidence they have ever had Lyme disease when I use the term “chronic Lyme disease”.)

      And from here, this is where problems come up because “post Lyme disease syndrome” and “post treatment Lyme disease” also describe the same patients.

      To disentangle this mess, it might be better to come up with a term for patients who have no history or evidence of Lyme disease at this point to distinguish them from those who do. I don’t know. I prefer to use “post-treatment Lyme disease”, but when I do, a lot of people don’t know what I’m talking about.

      In terms of position about treatment, it’s hard to know how best to treat patients with chronic Lyme/post Lyme because the underlying cause is unclear. As I’ve quoted Aucott and the CDC and NIH-NIAID elsewhere, the cause of patient’s persisting symptoms are not well understood, they are unknown, and research continues to determine if autoimmunity/immune dysregulation or infection is the cause of patients’ symptoms. From a scientific perspective, it simply isn’t known.

      Clinical trials on chronic Lyme/post Lyme have demonstrated that only a subset of patients who had the most severe symptoms had a positive benefit from more antibiotics; additional antibiotics did not help the majority. Additional antibiotics – especially IV antibiotics – are said to come with risks which outweigh the benefits and were not advised.

      I’m aware of all this. I don’t know if the cause of patients’ persisting symptoms are the same for all patients who have contracted Lyme disease, were treated, and didn’t get back to baseline. And I’m following different hypotheses for these persisting symptoms, collecting data, and learning what the evidence is which supports different models.

      I don’t want to rely on the information that either Lyme disease activists or advocacy organizations share or statements made by one or two people at the IDSA. I want to take assessment a step further back, and see what the actual studies say, and learn how reliable and valid those studies are and what is missing or an uncertainty; I want to talk to other scientists in the field and read their interviews and research concerning Lyme disease including microbiologists, immunologists, molecular biologists, etc. and see what they have to say, because I view their position as being further removed from what I view as something which has become a sociopolitical 2-ring circus known in popular media as “the Lyme wars”.

      This is a time consuming process but I think it is better to do it than to accept everything I read. I took it on because I myself developed persisting symptoms after initial infection with Lyme disease and early improper treatment, and saw how much misinformation was online and statements being made which were confusing and did not make sense nor lacked evidence to back them. I also saw that there was a distinct lack of patient engagement and education coming from the scientific community, and I’m wondering how to get more quality discussion of Lyme disease online for patients who are also science geeks – in sites such as http://spirochetesunwound.blogspot.com/.

      I think people with post-Lyme disease (if this term suits others better than CLD, for your sake meaning there being evidence of prior infection) are genuinely suffering and the condition requires more research to determine cause and better treatment. If it’s possible for more people to get back to their baseline health and do so more quickly, it benefits everyone – especially patients.

      I get tired of patients who have a history of Lyme disease (and even other tickborne infections) getting conflated with patients who may show up online and have never even seen a doctor once who claim they have Lyme disease or chronic Lyme disease. No one knows for sure in this situation, and it does muddy the picture.
      A clearer picture is necessary.

      1. Nashira says:

        @CampOther:

        If you would like to see less confusion between PTLDS and “CLD”, then perhaps it would help to not muddy the waters so much yourself. It took me two days to figure out that you were ignoring the CDC-style definitions, even though iirc that’s what other commenters were primarily using. I only figured that out based off a comment upthread where you refer to the medical world at large using different definitions than you do. That just seems odd to me, btw; I would rather diagnoses be determined and labeled by trained professionals, not by other patients.

        Even if “CLD” means something else in the EU or among the “Lyme community”, if I understood the post and comments correctly, we were using it here to refer to the vague collection of complaints. Not post-infection, post-tx symptoms of individuals with a confirmed Lyme infection in their history. (Although even then, I would be concerned about Lyme being blamed for anything and everything. Or people guzzling inappropriate treatments based solely off bunny studies.)

        oh btw, yes, I had meant to namedrop you in my middleground comment. Sorry.

  73. vadaisy says:

    Lyme disease funding needs to go to the experts skilled to do the research. The Lyme disease associations have a track record of involvement with many physicians and researchers who lack such skills and ethics.

    Many patients with “chronic Lyme” also have other confirmed bacterial infections.

    This would include many with the pseudo-diagnosis of chronic Rocky Mountain Spotted Fever Read the Lancet article mentioned above. ILADS and the Lyme disease associations have been slowly building their business model for years just out of the public’s eye. Luckily for them, their practices, specialty labs and home infusion companies are now in the public view due to the natural progression of a infectious diseases. This is good business for them, but it is a way to mislead the public into trusting their members and their practices and the medical information they disseminate.

    Before you embark on a journey for treatment of “chronic Lyme disease” or “chronic Rocky Mountain Spotted Fever” or even “chronic multiple infectious diseases” see a reputable M.D. who is Board Certified in Infectious Disease and on good standing with the medical boards and hospitals, not one who is self-dubbed or patient-nominated as an infectious disease or “Lyme-literate” specialist. Research the history of your provider with the state medical board and other law enforcement entities such as the FBI.

    Every state in the U.S. has a medical board and some of their physician discipline records are made available to the public online and free of charge.

    1. Camp Other says:

      vadaisy said:

      “Lyme disease funding needs to go to the experts skilled to do the research.”

      I agree, wholeheartedly.

      “The Lyme disease associations have a track record of involvement with many physicians and researchers who lack such skills and ethics.”

      There has been much discussion about doctors. Which researchers do you think lack skills and ethics in this area and why?

    2. Camp Other says:

      Here is a link to the Lyme Disease Association’s research grant recipients:
      http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=957:lda-awards-94-research-grants-since-1992&catid=186:research&Itemid=664

      Since 1992 they’ve had 34 grant recipients from 24 different major universities, medical centers, and institutions.

      These grants led to over 30 peer reviewed publications:
      http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=955:over-30-publicationspresentations-resulting-from-lda-funding-a-support&catid=101:outgoing&Itemid=287

      The above research led to the publication of 28 peer-reviewed papers in such journals as PLoSONE, Journal of Bacteriology, Genetics, Journal of Medical Entomology, Neurobiology of Disease, Gene, Emerging Infectious Diseases, Neurology, Infection and Immunity, JAMA, and others.

      The Lyme Research Alliance has a list of currently active projects: research on vertebrate reservoirs for tick-borne diseases in central US, identification of better diagnostic tests and better treatments for people with chronic persistent symptoms, strain virulence characterization from EM rashes, research on antineuronal antibodies in patients with persistent symptoms, exploration of potential biomarkers for persisting brain and nervous system symptoms, and investigation into autoimmunity treatment for chronic Lyme disease.

      Here is a list of those projects and associated researchers:
      http://www.lymeresearchalliance.org/research_new_active_projects.html

      Who amongst these recipients do you think lack skills and ethics and why? How did you come to your conclusion?

    3. Melissa Bell (FLDA) says:

      Thank you for your concern. My son has seen reputable Board Certified Infectious Disease doctors both in and out of state. Each ID MD confirmed Lyme, Bartonella, Mycoplasma, Chlamydia Pneumonia, a parasitic protozoan and viral infections. We carefully vet out doctors and have even search court files for litigation history. We also have other reputable MDs as part of his treatment team (i.e. cardiologist, immunologist and metabolic specialists).

      Your assumptions about ALL Lyme patients who require antibiotics over 30 days and ALL LLMDs is not valid and is prejudicial.

      Doxycycline and Minocycline (both of which are commonly used to treat LD) are commonly prescribed for YEARS to treat acne in adolescents. I find it incredulous that there is such a double standard.

      1. vadaisy says:

        Every single “LLMD” and every single “chronic Lyme disease” patient I’ve ever encountered throughout many years has been prescribed long-term IV antibiotics.

        Your assumptions about ALL Lyme patients who require antibiotics over 30 days and ALL LLMDs is not valid and is prejudicial.

        So we are to infer then that you’ve encountered every CLD patient in existence?

        Brush up on your mind-reading and reading comprehension skills. Every “chronic Lyme disease” patient I have ever encountered has been prescribed long-term IV antibiotics. A more clear statement cannot be made. Go play somewhere else and let your expert “LLMDs” take on their peers instead of toying with their patient’s lives and manipulating them into doing their bidding for them.

        1. whencarsfly says:

          I’d like to take the liberty to rephrase Melissa’s statement and question:

          Your assumptions about “every chronic Lyme disease” patients who require antibiotics over 30 days and ALL LLMDs is not valid and is prejudicial.

          So we are to infer then that you’ve encountered every CLD patient in existence?

  74. vadaisy says:

    Investigation into the medical practices of the Lyme Disease Association’s “Doctor Referral System” listing of “Lyme-literate” medical providers may shed some light on the true nature of the heart of their organization. It appears that most, if not all of these “LLMDs” are members of ILADS. It looks as if the LDA is the patient support arm of ILADS. Based on the appearance of this listing, anyone requesting a referral to a Lyme disease specialist would be most likely directed to an ILADS provider. A quick browse of these providers shows that the vast majority are alternative and integrative medicine providers. Some of these providers have a history of medical board sanctions and other troubles regarding patient safety and medical ethics.

  75. WLU – 2) “Fibromyalgia, CFS and CLD are all medically unexplained symtpoms (add to that Gulf War syndrome and multiple chemical sensitivity), none of which have a clear physical cause, all of which have strong patient advocacy groups demanding one. They are all basically wastebasket diagnoses that can’t be distinguished from each other and in my mind all have at least a subset of patients whose symptoms are at least in part psychogenic. It’s five different terms for what is at least partly somatoform disorder, the only difference being the insistence on what is really causing it.”

    I don’t see it quite this way WLU – do a search on the CDC website on these conditions and you’ll see different pictures of these conditions. They make it clear that Chronic Lyme Disease (as opposed to PTLDS) is not an evidence based diagnoses, while Fibro and CFS are. The CDC is clear that the cause or mechanism of Fibro and CFS is unknown and that there may actually be several different causes or mechanisms, they are, in short, placeholder diagnoses*.

    CLD presupposes a cause for a huge range of symptoms. Not only that but it’s clear that some CLD “experts” are presenting lyme disease (or other chronic bacterial infections) as the cause of other auto-immune and neurological conditions such as rheumatoid arthritis, spondyloarthropathies, parkinson, etc.** In other words some CLD advocates and experts don’t think of CLD as a diagnoses of exclusion (as CFS and Fibro are). They will dismiss evidence of other serious illnesses (such as visible joint inflammation, tests that indicate inflammation, auto-immune or neurological disease, etc) as being explained by CLD.

    One thing that much of the general public doesn’t understand is that many of these auto-immune and neurological conditions take years to develop and accurately diagnoses. Even a fews visits to a good evidence based doctor are not enough to rule out the many conditions that one of these self declared CLD experts may misdiagnose.

    So the problem is two fold. 1)offering a disproven therapy to people with a poorly understood condition. 2)the use of a diagnostic process that has a high risk of misdiagnosing other serious illness.

    *How any advocate of SBM or EBM can use the term “wastebasket diagnoses” and then be surprised at charges that these disorders are being ignored or swept under the rug is a mystery.
    **http://www.medscape.com/viewarticle/748084_3

    1. Camp Other says:

      mousethatroared said:

      “CLD presupposes a cause for a huge range of symptoms.”

      It can. It depends on what you’ve read and context is important. There is a core set of symptoms which is found in chronic Lyme/post treatment Lyme disease. Unfortunately, due to how each individual has been affected, they’ve come up with their own list of specific complaints rather than generalizing symptoms to categories.

      If a patient has neuropathy and conduction problems, this can lead to stabbing leg pain in one person and gastroparesis in another – stomach pain and low digestive motility. Shortness of breath can be caused by a paralyzed phrenic nerve. Different areas of the body can be affected by the same process.

      For example:
      The neurological complications of Borrelia burgdorferi
      in the New Forest area of Hampshire
      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1033080/pdf/jnnpsyc00540-0095.pdf
      Gastroparesis and Functional Dyspepsia: Excerpts from the AGA/ANMS Meeting
      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2892213/
      Diaphragmatic paralysis and respiratory failure as a complication of Lyme disease
      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1739811/

      Just a few quick examples of how diverse presentations can arise out of the same pathology – and if you review the literature out there, you can find more case studies as well as large scale studies which define a core set of symptoms found in chronic Lyme/post treatment Lyme disease.

      Patients who experience symptoms in later stage, disseminated Lyme disease can continue to experience them in a model of post (treatment) Lyme disease – one hypothesis from some is that nerve damage from the original infection continues to affect people.

      “Not only that but it’s clear that some CLD “experts” are presenting lyme disease (or other chronic bacterial infections) as the cause of other auto-immune and neurological conditions such as rheumatoid arthritis, spondyloarthropathies, parkinson, etc.**”

      I don’t think that the above list is accurate and that there isn’t enough evidence to support these claims. More often, I’ve heard some activists and patients make claims which are less likely to be supported by evidence than claims made by doctors, and it’s important to ask if those making such claims are only speculating about the disease process or if they think that which they’re stating are facts.

      This aside, there is research from the field at large which indicates that Lyme disease can lead to autoimmune disorders or at least suggests triggering an autoimmune process.

      For example:
      Very well known: antibiotic-refractory Lyme arthritis: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3338893/
      Antibody response to nerve axons, myelin basic protein:
      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2665673/
      Preliminary research on antineural antibody reactivity and its role (human):
      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2897967/
      Preliminary research on autoimmune Lyme carditis (murine):
      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC548028/

      This is only a few examples. Still a lot of work to be done in this area, obviously, especially if there are only murine studies on some autoimmune phenomena and no human studies yet. It’s not clear yet if all or only some patients with persisting symptoms (with a history of Lyme disease infection) have them due to an autoimmune response.

      “In other words some CLD advocates and experts don’t think of CLD as a diagnoses of exclusion (as CFS and Fibro are). They will dismiss evidence of other serious illnesses (such as visible joint inflammation, tests that indicate inflammation, auto-immune or neurological disease, etc) as being explained by CLD.”

      Any good doctor – specifically, any good diagnostician, LLMD or otherwise – will look at differential diagnoses and try to rule them out or rule them in. If someone has a different diagnosis, that will need to be addressed and treated.

      What kind of evidence would satisfy you that doctors who treat chronic Lyme disease have also considered differential diagnoses and properly addressed them?

      1. vadaisy says:

        None of these studies vary from the findings and treatment recommendations of the IDSA review panel.

        The cited diaphragmatic paralysis and respiratory failure patient declined rapidly over the course of six days, and was treated with the recommended dosage of IV antibiotics. None of this is evidence of “chronic Lyme” disease. It is in fact supporting of PTLDS, which does not improve with chronic antibiotic treatment. Mostly, these findings emphasize the importance of seeing a reputable board certified infectious disease specialist when one suspects an infection. Quite a few diseases and illness’ can cause respiratory problems, seeing an “LLMD” nearly guarantees a diagnosis of Lyme disease without adequate investigation of other causes.

        1. Camp Other says:

          “None of these studies vary from the findings and treatment recommendations of the IDSA review panel.”

          That would be correct.

          “The cited diaphragmatic paralysis and respiratory failure patient declined rapidly over the course of six days, and was treated with the recommended dosage of IV antibiotics.”

          Yes. I was giving an example of the kind of symptoms a patient with later stage Lyme disease can have, which after treatment could potentially continue in a patient under the diagnosis of post-treatment Lyme disease – the nerves may be damaged.

          “None of this is evidence of “chronic Lyme” disease. It is in fact supporting of PTLDS, which does not improve with chronic antibiotic treatment. ”

          For the subset of patients who have chronic Lyme disease who have evidence of a history of infection with Lyme disease, this is the case, and I agree with you.

          But do all PTLDS cases not improve with additional antibiotic treatment? What if the patient was originally undertreated – as in, they would be fine now if they had IV ceftriaxone for 4 weeks instead of 2-3 weeks of doxycycline?

          I’m trying to figure out what the different patient cohorts are in the PTLDS/CLD population. Some of them probably come from the “probable late Lyme disease” group: http://www.biomedcentral.com/1471-2334/12/173

          “Quite a few diseases and illness’ can cause respiratory problems, seeing an “LLMD” nearly guarantees a diagnosis of Lyme disease without adequate investigation of other causes.”

          See my exchanges with mousethatroared, re: how can one know that LLMDs or CLD specialists are not adequately investigating other causes for their patients’ symptoms?

          1. vadaisy says:


            “CLD specialists…”

            You continue to confuse the issues and confuse the terms. At this point, I can only conclude that you are doing this on purpose to maintain a state of confusion amongst patients and across any public viewers of your writings. You do this in support of the “LLMDs”, not in support of the evidence or of any real science. Science does not support the meaning or use of the terms “chronic Lyme disease” nor “CLD specialists”, or even “LLMDs”, only Internet hype, anecdotal claims and predacious medical providers support their continued use.

          2. vadaisy says:

            The cited diaphragmatic paralysis and respiratory failure patient declined rapidly over the course of six days, and was treated with the recommended dosage of IV antibiotics.”

            Yes. I was giving an example of the kind of symptoms a patient with later stage Lyme disease …

            You chronically confuse the terms and the symptoms. The patients symptoms onset shortly after the exposure to ticks, and she had been complaining of symptoms for only one month. She had a rapid decline necessitating the use of a ventilator within six days after admission to the hospital. Both her IgG and IgM were positive for Bb. That is not an example of “later stage Lyme disease” or “chronic Lyme disease”, and it does not support the use of chronic or long-term antibiotics nor necessitate the need for a “LLMD”. It strongly and fully reinforces the IDSA and CDC recommendations.

  76. FLDA says:

    Precisely how many CLD patients have you encountered? Apparently anecdotal evidence is relevant when it supports your world view. Throughout the discussion you have used your limited experience as a basis to judge, label and condemn CLD patients and LLMDs as a whole. So much for “science based” medicine.

  77. WilliamLawrenceUtridge says:

    @MTR

    I’ll fully admit that my opinion of MUS and its various incarnations is quite tainted in many ways – my interactions with proponents of these diagnoses were all quite acrimonious, their insistence on a single, absolute etiology is aggravating, and their failure to recognize the psyochogenic aspects of their illness for at least some patients is aggravating (for CFS, for instance, there appears to be active resentment of patients who get better or feel better due to psychotherapy). I’m quite sure in all cases that there are people with purely physical diagnoses that need to be weeded out, and their presence (collectively, I’m sure there are several such potential diagnoses to be investigated) interferes with progress in the area since you aren’t dealing with a homogeneous group or diagnosis.

    I do agree that this is a frustrating area to research, and can only be worse to actually experience. It could certainly be a medical specialty all by itself.

    My defence of the use of “wastebasket diagnosis” is that I use it as a term of contempt for the diagnosis, not the patient. While calling something “chronic fatigue syndrome” may be useful, much like “idiopathic ____” it’s basically a way of saying “we don’t know why you are tired” but gives the sense that we can stop looking. I should probably express it in a way that better conveys this, though I think some of my previous comments aimed mostly at CFS patients in the past had done this.

  78. WLU – Why would you want to give the sense that you can stop looking for a cause for CFS or Fibro – even if they appear to be functional or psychosomatic disorder? Seems to me those areas are rich in scientific possibility.

    Certainly, for a patient, though, one can reach a point where further testing become counter productive…is that what you mean?

    I’m not sure that I’m making myself clear. What I was trying to communicate is that with Fibro and CFS, an accurate diagnoses (and follow-up) should exclude known disease processes that are responsible for the symptoms*. Whereas some CLD advocates are not excluding other diseases, they are actively trying to incorporate them into the diagnoses of CLD. It’s got that “alternative medicine – one true cause of disease” thing going on. Similar to subluxation and chiropractors.

    1. WilliamLawrenceUtridge says:

      To really test etiologies, it would require also looking into psychosomatic etiologies – which in my experience (all hail Crislip) is resisted. But I don’t think FM and CFS are accurate diagnoses, they are diagnoses of exclusion – we can’t figure out what is causing your symptoms, and you’ve had them for more than 6 months, so we’re giving it this (relatively arbitrary) label and putting you into the same category as a whole bunch of other people with similar issues but no otherwise-underlying similarities. I realize why it happens, I hope the history of all such MUS-diagnoses is eventually a history of ever-diminishing pools of patients. And I wish CFS patients would stop threatening Simon Wessely with physical harm.

  79. WLU “I’ll fully admit that my opinion of MUS and its various incarnations is quite tainted in many ways – my interactions with proponents of these diagnoses were all quite acrimonious, their insistence on a single, absolute etiology is aggravating, and their failure to recognize the psyochogenic aspects of their illness for at least some patients is aggravating (for CFS, for instance, there appears to be active resentment of patients who get better or feel better due to psychotherapy). ”

    Just a reminder – It’s possible that the folks you have encountered are a bias selection of all CFS patients…vocal minority and all that.

    1. WilliamLawrenceUtridge says:

      Of course, but it’s very hard to shift one’s first impressions. Even I, arch-skeptic and wunderkind, am human and have biases :)

    2. vadaisy says:

      @MTR, I agree with you, but you have to admit, in the case with the “chronic Lyme” cases, the behaviour of most of their support associations, and the history of quack and experimental treatments by “LLMDs”, it is enough to give one a rather biased view in favor of categorizing the condition as psychiatric in nature.

  80. CampOther “What kind of evidence would satisfy you that doctors who treat chronic Lyme disease have also considered differential diagnoses and properly addressed them?”

    I will ask you a similar question that might get you to the same place. What evidence would satisfy you that Pain Clinics don’t prescribe unnecessary oxytocin?

    1. whencarsfly says:

      @mouse that doesn’t answer this question from @CampOther: “What kind of evidence would satisfy you that doctors who treat chronic Lyme disease have also considered differential diagnoses and properly addressed them?”

    2. Camp Other says:

      “I will ask you a similar question that might get you to the same place. What evidence would satisfy you that Pain Clinics don’t prescribe unnecessary oxytocin?”

      Hard question. Either you’re feeling the love or you aren’t…

      No, I know what you meant.

      I would say that one would have to collect objective evidence as well as reports from other medical professionals who see the same patients to determine if Pain Clinics patients have received the correct drug at the right dosage and duration, and that treatment helps patients in situations where either there is no alternative treatment available with evidence to support it or there is but individual patients cannot tolerate it.

      How do you collect such data without violating ethical practices, without violating HIPAA?

      Pain Clinics and their patients would have to submit to a voluntary review of patient records. Other doctors who see the same patients (presumably orthopedists and other specialists) would have to also be interviewed and consent would have to be given to review patient records. Patients would themselves need to be interviewed, and possibly individually assessed.

      What evidence would satisfy anyone that Pain Clinics don’t prescribe unnecessary oxycontin? I would think having an independent unbiased party collecting all of the data
      mentioned above and reporting on it would be one approach.

      Now if you wanted to be less exacting about it and only suspected patients were getting too many painkillers: You see which pharmacies patients went to and how many painkillers they were prescribed and who prescribed them.

      It’s important to find out if only individual patients are overprescribed to and it isn’t a wide scale issue, and if it applies only to Pain Clinics, too. Could be that some patients see a separate doctor on the side who unknowingly prescribes pain meds to them while Pain Clinics does, too, and neither clinic knows the patient is double-dipping. Acting responsibly in medicine is the responsibility of doctors and patients.

      Could you please address my original question:

      What kind of evidence would satisfy you that doctors who treat chronic Lyme disease have also considered differential diagnoses and properly addressed them?

      1. vadaisy says:

        There is not sufficient evidence that a syndrome or disease complex known as “chronic Lyme disease” exists separate and distinct from PTLDS.

        1. Camp Other says:

          vadaisy wrote:

          “There is not sufficient evidence that a syndrome or disease complex known as “chronic Lyme disease” exists separate and distinct from PTLDS.”

          By definition used in Dr. Hall’s NEJM article cited above, “chronic Lyme disease” patients very well can be considered to fall under the umbrella of “post treatment Lyme disease syndrome”. So you are correct.

          I think the real debate is more about etiology, causation – rather than name applied, though, when it gets down to it.

          So the next set of questions:

          Is there sufficient evidence that at at least some patients with a history of bonafide Lyme disease who were once treated and went on to experience persisting symptoms within 6 months of diagnosis and treatment and went on to have said symptoms have an autoimmune response or immune dysregulation?

          Is there sufficient evidence that least some patients with a history of bonafide Lyme disease who were once treated and went on to experience persisting symptoms within 6 months of diagnosis and treatment and went on to have said symptoms could have an infection which is antibiotic tolerant?

          1. “Is there sufficient evidence that at at least some patients with a history of bonafide Lyme disease who were once treated and went on to experience persisting symptoms within 6 months of diagnosis and treatment and went on to have said symptoms have an autoimmune response or immune dysregulation?”

            Vague as ever..at least with the important bits. Until clarified, I’d suggest that this is actually a poor question. What does “some patients” mean?

            For example if there was one and only one study of n=12 with P=0.02 showing 74% people who had that set of criteria had “auto immune response or immune dysregulation” . Is that “sufficient evidence of some people”?

            What about if there was another study of n=100 with P=0.04 showing 20% correlation?

            Is that “some patients”? Is that “sufficient evidence”? Did the presence of the second study alter your opinion of the first? If so, why? Do either study or both together provide a rationale of there being no-chance of CLD being correlated with Lyme disease?

            IMHO interest groups and other people who like to do sideline science. Sometimes have problems making their case because they don’t know what case they are trying to make.

          2. vadaisy says:

            “There is not sufficient evidence that a syndrome or disease complex known as “chronic Lyme disease” exists separate and distinct from PTLDS.”

            By definition used in Dr. Hall’s NEJM article cited above, “chronic Lyme disease” patients very well can be considered to fall under the umbrella of “post treatment Lyme disease syndrome”. So you are correct.

            I think the real debate is more about etiology, causation – rather than name applied, though, when it gets down to it.

            Then you should consider stopping the use of the label “chronic Lyme disease” – erase it from your vocabulary. If you are indeed trying to help people rather than continue to confuse the issues, then use the correct terminology. It confuses people who don’t know any better and assume it and you mean a chronic infection has been evidenced. Only the condition known as PTLDS has been evidenced, and to date, evidence points to it as being an auto-immune response and/or residual damage from the infection. That is only in patients who indeed had an infection in the first place.

  81. pffft, my bad – Oxycontin, not oxytocin.

    1. Camp Other says:

      It’s okay. It made me laugh, and I could use a laugh. :)

  82. Camp Other – But, I just had YOU do the work to answer my question. Like you said, one would need to compare how doctors who treat chronic Lyme disease to doctors of similar specialties or see if the number of diseases they diagnosed match a similar patient population…very like your answer.

    Recently I came across a study comparing the rates of overdiagnoses of SLE in Internist vs Rhuematologist…I’m not sure if I could find it again, but a similar method may be helpful. I’ll post it if I can find it.

    I will add though, even if we found that 80% of pain clinics prescribe unnecessary oxycontin and or 80% (or 20%, these numbers are random) of doctors who treat CLD properly address differential diagnoses, a patient (consumer) still has to consider the individual doctor they are dealing with, because you don’t know if they are representative the 80% or the 20%.

    But it’s kinda nice to have areas to pay particular attention to when considering a doctor. So if I was being tested for lyme disease, I would be very conscious of the differential diagnoses for my symptoms, the kind of testing that was being done, that the testing was being done through my standard hospital network (not an in-house or independent testing facility) and that the interpretation of the results matched the standard of care for that specialty…as far as I could tell.

    But this is kinda what I do anyway. I would also be very leery of some who seems to be a Chronic Lyme Disease specialist who’s patients are mostly diagnoses with CLD.

    At the very least, it’s good to consider the analogy of the blind men and the elephant. Specialists (of all kinds) can have a tendency to see symptoms through the lenses of their specialty.

    1. Camp Other says:

      mousethatroared said:

      “Recently I came across a study comparing the rates of overdiagnoses of SLE in Internist vs Rhuematologist…I’m not sure if I could find it again, but a similar method may be helpful. I’ll post it if I can find it.”

      I can imagine that there can be a distinct bias in seeing the diagnosis you expect to see – otherwise, why did the family doctor refer someone to you, the rheumatologist or some other specialist? But to be a good diagnostician, a doctor or specialist has to take a reasonable educated guess on what’s ailing their patient and double-check the referring doctor’s suspicions regarding diagnosis and their own.

      Unfortunately, not every doctor is a good diagnostician. It doesn’t mean they’re necessarily bad, but it’s more likely that an outlier will fall between the cracks if one is a mediocre diagnostician and those who are obvious cases who have conditions which are common in the general population will have their medical needs met anyway.

      “I will add though, even if we found that 80% of pain clinics prescribe unnecessary oxycontin and or 80% (or 20%, these numbers are random) of doctors who treat CLD properly address differential diagnoses, a patient (consumer) still has to consider the individual doctor they are dealing with, because you don’t know if they are representative the 80% or the 20%.”

      Yes, I’d agree. And there is no way for me, the individual patient, to know if the particular pain clinic I walked into overprescribes or that a particular CLD-treating doctor properly addresses differential diagnoses unless I get a referral from other patients and/or other doctors who tell me that an individual pain clinic tries to use the lowest dose of pain medicine possible and works to get one’s insurer to cover physical therapy and other methods of pain management or tells me a CLD-treating doctor has checked patients out for other conditions (or at least refers them on to a specialist who could).

      The only other way to be savvy about it is to check pain clinics and doctors’ public records and see what was said, and be cautious about online patient reviews unless there is some system in place to certify/vet them as genuine (whether positive or negative reviews).

      Beyond that, you learn about a doctor by making your own judgment about how your case is being handled by them, and vote with your feet if it isn’t working for you. Engage in ongoing patient education from different sources about your condition. (This becomes particularly important if you have a condition which is not well understood or is an orphan/rare condition.)

      I wouldn’t rely on just one doctor in the long run in managing my health if I had comorbidities or a complex presentation, either – I’d get second opinions; I’d see more than one specialist – especially if surgery or a risky treatment were proposed.

      “But it’s kinda nice to have areas to pay particular attention to when considering a doctor. So if I was being tested for lyme disease, I would be very conscious of the differential diagnoses for my symptoms, the kind of testing that was being done, that the testing was being done through my standard hospital network (not an in-house or independent testing facility) and that the interpretation of the results matched the standard of care for that specialty…as far as I could tell.”

      That makes sense. Optimally state health departments need to issue PSAs to alert everyone during tick season, so people try to prevent disease before they ever get a tick bite. After that, ensure they know what to do after a bite and make sure family doctors follow up on patients who have a flu-like illness or no rash, or have a different rash from an EM rash.

      I often think the later stage complications which arise in Lyme disease could be reduced is if patients went back to their doctors earlier if they still didn’t feel right and if doctors considered tickborne diseases (including ones which are not Lyme disease) as a possible cause for patients’ symptoms early on. It’s tricky, though, because symptoms can overlap with other conditions even in early presentations… It’s a hard job.

      It’s good to get one’s testing done by more than one lab, ultimately, because there can be a difference between labs. But also, good to get more than one serological test for Lyme disease done because timing is important; if the test is run too soon there may not be an adequate antibody response to determine infection is present. (This raises other questions in regards to some European research on antibody responses to Borrelia burgdorferi sl, but I’ll set that aside for the moment.)

      Follow-up testing can be critical in confirming someone has Lyme disease. But a follow up appointment with a doctor can also be useful if additional symptoms show up which make the possibility of a differential diagnosis clearer.

      “I would also be very leery of some who seems to be a Chronic Lyme Disease specialist who’s patients are mostly diagnoses with CLD.”

      I can see why that’s a concern. How does one know that a doctor is only diagnosing patients with chronic Lyme disease but doesn’t also diagnose them with other conditions? Either on their own, instead of CLD – or in addition to CLD – and they can be confirmed by supporting specialists and other doctors?

      Patients who see CLD specialists could report online that they received a diagnosis of CLD from such doctors, but not self-report any differential diagnosis they may also receive and get treated for as well – or receive and get treated for instead. I have no way of knowing how many people do, as an outside observer.

      If I see a CLD specialist, I’ll know what my experience is; I may know what the experience is of other patients seeing CLD specialists who tell me theirs. But that’s still a fraction of the body of CLD doctors and patients out in the world.

      And if there isn’t an external, independent method of validation to track the number of patients in each county and/or state who go on to develop persisting symptoms after initial treatment for a bonafide case of Lyme disease, one can’t know for certain who might be more likely to fall under the umbrella of “chronic Lyme disease” as a subset of PTLDS patients. There’s no independent confirmation, is there, the way the medical system is currently designed?

  83. vadaisy says:

    A reminder about the intention of the original discussion: (emphasis added)

    A deplorable article by Suzy Cohen on Huffington Post is titled “Feel Bad? It Could Be Lyme Unless Proven Otherwise.” It consists of irresponsible fear-mongering about a nonexistent disease. A science-based article would be titled “Feel Bad? It Couldn’t Be Chronic Lyme Disease Because CLD Is Nonexistent Until Proven Otherwise.”

  84. mousethatroared says:

    good point – vadaisy, amidst all the waits for moderations and other discussions, I got a bit side-tracked.

    1. vadaisy says:

      @MTR, Knowing more about the history of this nonsense than yourself, presumably, I suggest you were intentionally led astray by CampOther.

  85. Camp Other says:

    Jonathan Graham said:

    “Vague as ever..at least with the important bits. Until clarified, I’d suggest that this is actually a poor question. What does “some patients” mean?

    For example if there was one and only one study of n=12 with P=0.02 showing 74% people who had that set of criteria had “auto immune response or immune dysregulation” . Is that “sufficient evidence of some people”?

    What about if there was another study of n=100 with P=0.04 showing 20% correlation?”

    It was a poorly phrased question. Apologies.

    A somewhat different and more set of specific questions, then:

    Outside of those studies which provide evidence that patients with a history of Lyme disease develop antibiotic refractory Lyme arthritis – which is a documented autoimmune response – what percentage of patients with a history of Lyme disease develop persisting symptoms after treatment in which there is evidence that an autoimmune condition is present which was triggered by Lyme disease? And what is the strength of that evidence?

    Also, are post-antibiotic treatment studies on Lyme disease in animal models considered useful data for determining that a similar process can occur in humans? Why or why not?

    “IMHO interest groups and other people who like to do sideline science. Sometimes have problems making their case because they don’t know what case they are trying to make.”

    That may be at times – no one is perfect. The best way for anyone to make their case is to continue to learn and to refine it. The scientific method isn’t just about presenting a case – it’s also about building one and creating hypotheses to test along the way.

    In a number of situations, sometimes one is still collecting data and trying to figure out what happened – also trying to determine what data is missing and has yet to be collected.

    1. “what percentage of patients with a history of Lyme disease develop persisting symptoms after treatment in which there is evidence that an autoimmune condition is present which was triggered by Lyme disease?”

      “triggered” isn’t a good word – it’s essentially begging the question. If you knew the probability that a symptom was triggered by Lyme disease you wouldn’t need to do the research. You could ask how well do some list of auto-immune condition symptoms correlate with people who have been confirmed as having Lyme disease and having been treated. However if that list is long (and I figure it is) and the sample is small (which I figure it will be) and perhaps even the treatments aren’t entirely uniform (or there’s a percentage who are taking some drug). The result doesn’t sound very informative.

      “Also, are post-antibiotic treatment studies on Lyme disease in animal models considered useful data for determining that a similar process can occur in humans? Why or why not?”

      Not a good question. Animal models for disease are tricky. What you can do is pick a very specific symptom which has a very clear and specific etiology and attempt to promote the disease in some way. In any case it isn’t a test that’s very good at ruling something in. The FDA rejects the vast majority of drugs – if animal models were generally good predictors then this probably wouldn’t happen. Not to mention we could cure all sorts of things just by force-feeding candidate molecules and burning through a few billion bunnies per year. Orders of magnitude cheaper than phase III trials.

      “The best way for anyone to make their case is to continue to learn and to refine it.”

      Wrong. The best way (statistically) to make your case is to try very hard to discredit it. Refining is a by-product of the discrediting process. For example in cosomology. Many experiments are done concerning the location of dark matter. Many of them fail, in failing they tell you both where dark matter isn’t and where it may be. This is a problem when you are doing research in societies for diseases or therapies which are…er…ontologically challenged…you lose one of the most powerful weapons one can have as a researcher. The ability to decide that what you’re researching is utterly wrong. Of course your response here would be that this happens elsewhere. Which is of course true, but not really that relevant. Someone who is the president of the “I have invisible wings” society. Doesn’t attempt to disprove the existence of invisible wings.

      “and creating hypotheses to test along the way.”

      Oh thanks for telling me what science is *REALLY* about. Your wisdom must be celebrated far an wide. Hypothesis generating experiments are fine. Frankly if someone belongs to a fan club for some particular disease. They are largely useless. Why? Because they already think something is *there*. Otherwise why belong to the “Royal order of those who excrete saraphim” or whatever….if you don’t believe there’s something to the evidence.

      Want to demonstrate that you really are afflicted with rectally implanted harp players?

      Try hard to discredit it.

      1. Camp Other says:

        Will be responding to this in two parts.

        Jonathan Graham said:

        “If you knew the probability that a symptom was triggered by Lyme disease you wouldn’t need to do the research.”

        So why are some people so certain that patients who have contracted Lyme disease, get treated, and go on to develop persisting symptoms within 6 months that last for months to years now have an autoimmune condition due to it?

        It was my understanding that researchers do not know what causes PTLDS – yet quite a number of people including vadaisy here state that (to quote them) “Only the condition known as PTLDS has been evidenced, and to date, evidence points to it as being an auto-immune response and/or residual damage from the infection”.

        I know there is evidence to support this in Lyme arthritis, and I pointed to the potential for this to be the case in other symptoms, but vadaisy speaks as if this or damage is the definitive answer when the CDC and others state the reason 10-15% of patients develop PTLDS is unknown. Just seeking clarification on this.

        “You could ask how well do some list of auto-immune condition symptoms correlate with people who have been confirmed as having Lyme disease and having been treated.”

        Well, there are already case studies and preliminary larger scale studies demonstrating the possibility persisting symptoms could be caused by an autoimmune reaction due to Lyme disease. But one has to distinguish these from developing an autoimmune condition independently – say one which developed due to a genetic predisposition. Otherwise, it isn’t cause and effect – it’s only correlation.

        “Animal models for disease are tricky. What you can do is pick a very specific symptom which has a very clear and specific etiology and attempt to promote the disease in some way. In any case it isn’t a test that’s very good at ruling something in.”

        Good point. I know, researchers use specially bred mice to study aspects of Lyme arthritis and they’re relatively good models for this. But they’re supposedly poor models to study neuroborreliosis – at least according to Dr. Stephen Barthold. And one has to be careful with one subset of wild type mice in experiments on Lyme disease because they have a natural immunity to it.

        So what does one do? If the murine model is a poor model for ruling something in in the human model, what are your options? Some have said non-human primate models would be best, but even they are different in some ways from humans. The way they respond to doxycycline is apparently different from how humans do. So Lyme disease studies using doxycycline in non-human primates may not lead to findings one can use to mimic a human model of infection and treatment.

        “The FDA rejects the vast majority of drugs – if animal models were generally good predictors then this probably wouldn’t happen.”

        Nods. There has to be a better way. Computer predictive modeling? Only to a degree, right?

        1. vadaisy says:

          quite a number of people including vadaisy here state that (to quote them) “Only the condition known as PTLDS has been evidenced, and to date, evidence points to it as being an auto-immune response and/or residual damage from the infection”.

          I know there is evidence to support this in Lyme arthritis, and I pointed to the potential for this to be the case in other symptoms, but vadaisy speaks as if this or damage is the definitive answer when the CDC and others state the reason 10-15% of patients develop PTLDS is unknown. Just seeking clarification on this.

          Directly quoting the CDC website: The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and “auto–immune” responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter’s syndrome), and Strep throat (rheumatic heart disease).

          The evidence and consensus point towards PTLDS as being the result of residual damage to tissues and the immune system that occurred during the infection. At this time there is not sufficient evidence to indicate that a syndrome or disease complex known as “chronic Lyme disease” exists separate and distinct from PTLDS and requiring chronic antibiotic treatment.

        2. “So why are some people so certain that patients who have contracted Lyme disease, get treated, and go on to develop persisting symptoms within 6 months that last for months to years now have an autoimmune condition due to it?”

          You are asking me to tell you why someone ELSE thinks something is true? Seriously? You asked essentially the following question “How likely is very long list of symptoms (probably highly variable) which are potentially indicative of some list of conditions potentially causative to some long list of other symptoms (highly variable) after treatment (moderately variable) which are found after some other (shorter) list of symptoms. (not very variable)”

          As I said if you could answer that you don’t really need a study and attempting to study that on a small sample is probably a waste of time. Now that doesn’t exclude the possibility that some particular condition which has a sufficiently strong correlation to a particular symptom could be strongly correlated to a particular strongly correlated symptom of another condition. However that doesn’t mean that would work for any two symptoms for any two conditions.

          “You could ask how well do some list of auto-immune condition symptoms correlate with people who have been confirmed as having Lyme disease and having been treated.”

          “Well, there are already case studies and preliminary larger scale studies demonstrating the possibility persisting symptoms could be caused by an autoimmune reaction due to Lyme disease.”

          How does a case study indicate anything about the nature of the disease? What does “demonstrate the possibility” mean?

          “So what does one do? If the murine model is a poor model for ruling something in in the human model, what are your options? Some have said non-human primate models would be best, but even they are different in some ways from humans. The way they respond to doxycycline is apparently different from how humans do. So Lyme disease studies using doxycycline in non-human primates may not lead to findings one can use to mimic a human model of infection and treatment.”

          As a rule of thumb if you have to ask “How well does Ape study X inform the hypothesis Y in humans” then the question you should have been asking is usually: “Why the hell did we cut up some apes if we don’t have a strong animal model of the disease?”

          “Nods. There has to be a better way. Computer predictive modeling? Only to a degree, right?”

          You need pretty good information on mechanism to come up with a computer model. FAH@Stanford has published 192 papers and hardly any of them are as high-level as what you are talking about.

    2. “You could ask how well do some list of auto-immune condition symptoms correlate with people who have been confirmed as having Lyme disease and having been treated. However if that list is long (and I figure it is) and the sample is small (which I figure it will be) and perhaps even the treatments aren’t entirely uniform (or there’s a percentage who are taking some drug). The result doesn’t sound very informative.”

      I should also add: “and the variability is high (which it probably is)”

  86. Jim C says:

    Shame on you. May God reset the table with regard to your hate.

  87. Camp Other says:

    Jonathan Graham said:

    “Oh thanks for telling me what science is *REALLY* about. Your wisdom must be celebrated far an wide.”

    I wasn’t telling you what science was really about. You missed my intent. I was saying that sometimes people are in the process of collecting data to build their case – and that is part of the scientific method.

    Citizen science is about collecting data to build one’s case and test a hypothesis, and someone doing citizen science (as with anyone working in science) hopes that their own hypothesis will be correct. But to be a realist, one has to be prepared to find evidence which indicates their hypothesis will be incorrect. But that’s not a loss – that’s a gain, because it means they learned something from the experiment. And it’s an iterative process – they’ll learn something in the design, execution, and outcome of the next experiment, too.

    “Hypothesis generating experiments are fine.”

    Nods.

    “Frankly if someone belongs to a fan club for some particular disease. They are largely useless. Why? Because they already think something is *there*. Otherwise why belong to the “Royal order of those who excrete saraphim” or whatever….if you don’t believe there’s something to the evidence.

    “Want to demonstrate that you really are afflicted with rectally implanted harp players?

    Try hard to discredit it.”"

    Fan club? I can’t imagine anyone outside of microbiologists would be in fan club for a certain disease. And I’d call it more of a special interest group or SIG, anyway.

    What you’re driving at is that there is no point in listening to someone who thinks they have a particular condition when there is no evidence to support its existence. That’s a different situation, though, than having a condition which is poorly understood and researchers are still determining what the causative factors are for the disease and do not have a complete picture of its pathogenesis.

    1. “I wasn’t telling you what science was really about. You missed my intent. I was saying..”
      “Citizen science is about,,,”

      Seriously? In one sentence you want to chastise me about how you couldn’t possibly be dictating to people what science is about and then you want to start the next paragraph dictating what “Citizen Science” is about?

      I just got the irony gauge on this thing fixed.

      How about we put all your labels and dictates in a box called “BS that we really don’t need to sort out right now and you’re probably not in charge of anyway” and instead talk about how “building data to test a hypothesis” means designing and executing an experiment which will clearly rule it out.

      Take for example the Irlen syndrome thread. One of the big red flags for me there is effect size. When you look at what proponents claim SSS does to your eyesight the effect is incredibly strong. When you look at some of the corroborating research regarding correction the effect is minimal.

      “But to be a realist, one has to be prepared to find evidence which indicates their hypothesis will be incorrect..”

      Considering some of the experiments people come up with (including you). I don’t think you have to worry much about finding disconfirming evidence. What the Irlen experimenters should have done was tried much harder to discredit their hypothesis. That’s how you make a strong argument.

      Instead they wrote a study which found a small (16%) improvement in reading which is interpreted as “treating irlen”. This is actually *DISCONFIRMING* evidence for Irlen. Why? Because testing for a strong effect is like testing to see if Godzilla is in the room. So when a WEAK effect is discovered you are essentially saying “Well I found this lizard but I think if we look harder we will find Godzilla. Godzilla is a lizard right? It stands to reason.”.

      The chances are slim to none. Now you could throw a big party about finding a lizard but that wasn’t the hypothesis you were trying to confirm and the test to answer the question “Are there any reptiles in this room?” is much harder to design and power well than “Is Godzilla in the room?” Not to mention you can scale any hypothesis down to (and below) the noise floor. (What if I just find a lizard foot? What about a lizard scale? What about some lizard DNA?)

      Put another way an experiment informs a hypothesis proportionately to the probability that it could falsify it. So again, how hard are you working on demonstrating that you are wrong?

      “And I’d call it more of a special interest group or SIG, anyway.”

      Potato, potato.

      “What you’re driving at is that there is no point in listening to someone who thinks they have a particular condition when there is no evidence to support its existence. That’s a different situation, though, than having a…”

      No what I’m saying is that for the most part The Mickey Mantle Fan Club does not need to perform a study on the potentiality that some people think Mickey Mantle is cool. Hypothesis generation is done and perhaps by virtue of their membership they are UNLIKELY to attempt to perform well-defined, highly specific experiments to see where exactly Mr. Mantle is not cool.

      It doesn’t matter if you want to frame the problem as a difference ontology or etiology or mechanism. The hypothesis is there now shut up and show me how you’re wrong.

      1. “The hypothesis is there now shut up and show me how you’re wrong.”

        or perhaps “In what ways you can be wrong” if it’s easy to describe a number of ways then….

        a) You now know the work that needs to be done.
        b) You know you aren’t trying hard enough to falsify (otherwise it wouldn’t have been easy).
        c) You can stop trying to hedge things with statements like “Isn’t it POSSIBLE, that SOMEONE, POTENTIALLY might have a positive response to X?”. The answer is: “It doesn’t matter”. You can’t design a therapy protocol on “somebody somewhere might”.

  88. Camp Other says:

    vadaisy said:

    “Then you should consider stopping the use of the label “chronic Lyme disease” – erase it from your vocabulary. If you are indeed trying to help people rather than continue to confuse the issues, then use the correct terminology.”

    I hear what you’re saying and understand your position. I am trying to help people. The problem is, how can I help people when they state their condition is “chronic Lyme disease” and you deny the condition’s existence – yet the people stating this would have post-treatment Lyme disease by at least part of your definition of it?

    There are patients using the term “chronic Lyme” and so are LLMDs and some resarchers. This includes patients where other doctors could independently examine their records and symptoms and take blood tests and see they have a history of infection with Lyme disease. If anyone were to tell them their condition doesn’t exist, they would get rather offended, based on the fact they have evidence of contracting Lyme disease.

    How is the public to distinguish between patients who have genuinely contracted Lyme disease and patients who (to get back partly on the topic above) have not who seek a label, an explanation for their symptoms? The problem is we can’t, isn’t it? Not by their self-reporting, anyway.

    And on the internet, the problem is some patients can get marginalized this way. They can get told repeatedly there’s no evidence they have ever had Lyme disease when they’re sitting there with the lab results from Quest in their hand, stating their Lyme disease test is positive and they had an EM rash – yet they were treated, have persisting symptoms, and recently decided to see an LLMD.

    Should I doubt their story about their lab results – especially as another patient? Or should I try to support them and accept what they’re saying is true regarding their results?

    How can I be sure either way? How does one determine who has or has had Lyme disease who goes to see LLMDs – and who does not?

    This is important because the argument of whether or not a given LLMD is treating a disease that does not exist hinges on it.

    “It confuses people who don’t know any better and assume it and you mean a chronic infection has been evidenced. Only the condition known as PTLDS has been evidenced, and to date, evidence points to it as being an auto-immune response and/or residual damage from the infection. That is only in patients who indeed had an infection in the first place.”

    No one knows what causes PTLDS. That’s what the CDC, Dr. John Aucott, Dr. Armin Alaedini and others have stated.

    Lyme arthritis can be antibiotic refractory and there is evidence to support it being an autoimmune condition – but what is the weight and quality of the evidence to support other manifestations of PTLDS as being autoimmune in nature?

    This is where I’m uncertain, and I don’t think the science returns are there yet – otherwise, the NIH-NIAID wouldn’t continue to fund studies on alternative hypotheses about them.

  89. OspA says:

    So, who can tell me what the chemical structure of OspA actually “is”, since nobody at the CDC, NIH, NIAID, etc can actually tell anyone. Ya know…structure = function. I’m sure someone here can edumacate me on that…..

  90. CampOther – “why are some people so certain that patients who have contracted Lyme disease, get treated, and go on to develop persisting symptoms within 6 months that last for months to years now have an autoimmune condition due to it?”

    This is just not mysterious – It’s widely known that many autoimmune conditions are triggered by infections…Of all sorts -bacterial and viral, as well as stress, fatigue, sunlight, hormone fluctuations.

    The fact that one infection triggers the auto-immune process in some people does not show that the person is undergoing a unique process caused by Lyme disease and it certainly doesn’t suggest the idea that ongoing treatment of Lyme disease with antibiotics is going to treat the auto-iummune disease.

    CampOther – this is the whole point I have been trying to make. You continue to think of auto-immune disease as caused by Lyme Disease and therefore the diagnoses of Chronic Lyme Disease is appropriate. But that is NOT the case, if you have rheumatoid arthritis or SLE or ankylosing spondylitis, even if you had a verified case of lyme disease and treatment that was the first symptoms of the disease, then you have those auto-immune diseases and should be treated for those auto-immune disease. Just like if you had a verified case of strep, pneumonia, sunburn, pregnancy… all things that can be the first trigger for an auto-immune disease flare.

    The evidence shows that ongoing treatment for a past infection is not effective AND it is going to be even more dangerous for a person with an auto-immune disease than a typical person.

    And I hope to God any doctor of mine is not going to continue to tell me that I have CLD and treat me with long term antibiotics, because they don’t want to hurt my feelings by informing me that CLD isn’t an evidence based diagnoses. I hope that they look for an evidence based diagnoses and give me the best treatment possible based on an evidence/science based risk/benefit analysis.

    Also – Research has looked for concentrations of these autoimmune diseases in regions with high rates of high tick-borne illnesses, but have not found them.

    Why not? Well probably because these autoimmune conditions are triggered by a broad range of environmental factors in people who are born susceptible to the auto-immune disease.

    When you only look at one disease, it IS going to look like it causes all the diseases it’s related to, but that’s not looking at whole picture.

    1. Melissa Bell (FLDA) says:

      “Also – Research has looked for concentrations of these autoimmune diseases in regions with high rates of high tick-borne illnesses, but have not found them.”

      While I do not know to what extent Lyme causes autoimmune conditions, you cannot rely upon the current reporting methods to determine true incidence of tick-borne diseases.

      We often hear the statistic that “96 percent of Lyme Disease cases were concentrated in 13 states.” So called “experts” go so far as to say that it is a “myth” that Lyme Disease occurs in all 50 states. This conclusion is not only false, but also may lead to catastrophic consequences when people, the highest percentage of which are children, fail to get diagnosed early on due to reliance on such falsehoods.

      First, it is critical to note that not all states receive federal funding to specifically track Lyme Disease. Not surprisingly, all 13 of the states with the highest reported cases also receive federal “Lyme Disease” grants for Epidemiology, the tracking of Lyme cases (along with 2 other emerging states). Thus, while most “reported” cases for Lyme Disease are in the Northeast, cases in the other areas such as the South remain vastly underreported. In addition to the disparity of federal funding:

      When a doctor thinks a disease is “rare” in a geographic region, it is not on his/her diagnostic radar screen. The failure to timely test for and diagnose Lyme Disease in in its early stage potentially causes patients to needlessly suffer permanent damage and/or a much more difficult to treat, persistent infection. Even with CDC positive Lyme Disease tests and a clear clinical presentation, patients have reported that their doctors insist that the results must be a “false positive” because the patient had not recently travelled to the Northeast.

      Likewise, when citizens of southern states think that Lyme Disease and other tick-borne infections are “rare”, they do not take routine precautions such as performing daily body checks for ticks, spraying skin and clothing with tick repellant and avoiding tick habitat.
      The warm, humid climate in the Southeast results in year round tick activity.

      In the Southeast, there are numerous strains of Borrelia burgdorferi (the bacteria that causes Lyme Disease), including two newly discovered strains as outlined in the recent groundbreaking research by Dr. Kerry Clark. Importantly, these strains are not covered by traditional lab tests, which screen for a single strain. Thus, individuals in the Southeast are more likely to obtain false negative lab results. Dr. Clark has found Lyme infected ticks throughout the Southeast.

      In practice, the Southeast requires a heightened standard for reporting Lyme Disease cases. For example, whereas Georgia was the fourth leading state for Lyme Disease cases in 1989, the reported cases steeply declined after the change in reporting criteria. A report presented to the Institute of Medicine’s Tick-borne Disease Advisory Committee showed that 70 percent of reported cases are RASHES ALONE – no positive test result or recall of tick bite needed. Yet, in states in the South, rashes alone are not reported as cases. Thousands of southern patients annually report these rashes, but their cases never show up on the books. Thus, there is no way to compare statistics when what is reported as a case in one state is routinely dismissed in another.

      The CDC has repeatedly refused to recognize clear-cut cases of Lyme Disease outside of the Northeast by coining a new name, STARI, a “Lyme like” illness which is not counted in reporting figures. See research by Dr. Masters and the highly acclaimed book Cure Unknown for more on this topic.

      Due to the significant issues with reporting, it is impossible to establish a correlation, or lack there of, between Lyme Disease and autoimmune conditions.

  91. WilliamLawrenceUtridge says:

    CampOther – this is the whole point I have been trying to make. You continue to think of auto-immune disease as caused by Lyme Disease and therefore the diagnoses of Chronic Lyme Disease is appropriate. But that is NOT the case, if you have rheumatoid arthritis or SLE or ankylosing spondylitis, even if you had a verified case of lyme disease and treatment that was the first symptoms of the disease, then you have those auto-immune diseases and should be treated for those auto-immune disease. Just like if you had a verified case of strep, pneumonia, sunburn, pregnancy… all things that can be the first trigger for an auto-immune disease flare.

    And THIS is why SBM needs a “like” button for comments.

    We often hear the statistic that “96 percent of Lyme Disease cases were concentrated in 13 states.” So called “experts” go so far as to say that it is a “myth” that Lyme Disease occurs in all 50 states. This conclusion is not only false, but also may lead to catastrophic consequences when people, the highest percentage of which are children, fail to get diagnosed early on due to reliance on such falsehoods.

    Questionable. The bulls-eye rash alone obviates against blatantly missing LD. While not all patients get said rash, unless there is something systematic happening in the low-Lyme states to prevent such rashes, a consistent, non-zero number of Lyme cases will show enough of this borderline-diagnostic rash to cause an uptick in incidence and reporting.

    Thousands of southern patients annually report these rashes, but their cases never show up on the books.

    Officially? If this is the case, if there are these many cases, is there any documentation of it in the scientific literature?

    I just don’t understand why all these LLMDs are focussing so much on treating patients and acquiring popular, often political support, with no comparable efforts going towards publishing scientifically sound articles in the peer reviewed press. Scientific evidence and discussion, of sound methodology and with replicable results, will do far more to help people than the hundreds of comments found here, or on any popular article. Dogmatic insistence on unverified facts just makes CLD-proponents look like quacks.

  92. Mellisa Bell

    “Due to the significant issues with reporting, it is impossible to establish a correlation, or lack there of, between Lyme Disease and autoimmune conditions.”

    You seem to admit that some states (that are labeled as Lyme endemic) have good tracking of Lyme Disease, but then go on to say it’s impossible to establish correlation.

    Why don’t the states that have good tracking and reporting see more cases of these auto-immune diseases in counties that have more cases of lyme disease? Why don’t people with auto-immune diseases in these states have a higher rate of a history of lyme disease infections than of other viral or bacterial infections or other triggers?

  93. Just need to add – even if there was a coorelation between lyme disease and some specific types of auto-immune disease, that would not indicate that the patient had chronic lyme infection and needed long term antibiotics. There is a correlation between being sunburned and later developing skin cancer. That doesn’t mean that ongoing sunburn treatment is an effective cure for cancer.

    1. vadaisy says:

      There is a correlation between being sunburned and later developing skin cancer. That doesn’t mean that ongoing sunburn treatment is an effective cure for cancer.

      The “LLMD” selling points and emphasis would be on that it might be an effective cure for some people with cancer. Therefore, everyone with cancer should be given the freedom to use ongoing sunburn treatment in the hope that it might cure their cancer. Their chronic sunburn treatment should be covered by insurance and any practitioner selling said treatment for cancer should be exempt from any malpractice suits, peer oversight or medical board investigations. As Congressman Gibson says, doctors should be allowed to experiment on their patients. What could possibly be the harm in that?

  94. vadaisy “The “LLMD” selling points and emphasis would be on that it might be an effective cure for some people with cancer. Therefore, everyone with cancer should be given the freedom to use ongoing sunburn treatment in the hope that it might cure their cancer.” etc

    Yes – that seems to be the position of a lot of alternative medicine organizations. In fact I believe that people should have the freedom to do what they want to their skin. I just don’t believe that a medical doctor should be able to use or promote the use of disproven diagnoses or treatments and keep their medical license.

    It’s like continuing to license a tattoo parlor that uses an alternative definition of hepatitis and experiments with alternative preventative measures. Or maybe a licensed restaurant that uses an alternative definition of e-coli and hygiene measures – suggesting that maybe e-coli exposure actually increases the average lifespan.

    I mean, I’m an American. I should be free to eat in a restaurant unhindered by government intervention, right?

  95. whencarsfly says:

    For those of you who assume that there is no such thing as Chronic Lyme Disease, I have a simple question that is relevant to the topic of the original piece. It will be easy to answer because and it’s hypothetical so there is no imminent danger to the health of you or your loved ones.

    Here is the simple “yes” or “no” question: Would you have any qualms about you or a loved one receiving a blood transfusion from someone with “PTLDS”?

    Feel free to explain your answer if you feel it is necessary.

    1. vadaisy says:

      One could argue an offer that you should try the treatments that other patients of “LLMDs” have received and see if you derive the same benefits. I’d hook you up with one for a discussion of the pros and cons, but they are deceased due to their quack treatments. But, what the heck, why don’t you give their treatment protocol a try anyway? I bet your “LLMDs” forget to mention the patients that slip through the cracks. They slipped through the cracks and fell for the quacks, and now some don’t live to tell about it.

    2. WilliamLawrenceUtridge says:

      No qualms provided their blood passes the usual screens included as part of blood donation. I do not believe that whatever causes CLD is infectious.

    3. Sign me up. To save time, I’ll also let you know I’m willing to take blood from people who have complex but hard to define “food allergies” and have been bitten by vampires.

  96. whencarsfly – One of the first criteria for being eligible to donate blood is being in good health. How can a person who fits the diagnoses of PTLDS also be eligible to donate blood?

    1. vadaisy says:

      Their rationale is to challenge everyone to allow themselves to be bitten by infected ticks and then dare them to claim that the recommended treatment protocol cures them. They can’t quite get the words out, so they resort to what they know most, and that is foil-lined hats.

      1. whencarsfly says:

        @vadaisy: if this comment is in reference to my question, I’m unable to draw the connection. I didn’t challenge anyone to allow themselves to be bitten and i don’t know anything about foil-lined hats…help me out.

      2. I’ve always assumed that this kind of challenge was just a catastrophic misunderstanding of decision theory…

        Statements of the form: “If you believe X does not exist then you would have no problem doing Y” often with an expressed or implied “and if you do have a problem with doing Y then it’s unreasonable to believe X does not exist”.

        Are invalid for (at least) three reasons:

        i) Y may have risks that are not associated with X
        ii) Y may have next to no value to the person. So it is still rational to reject doing Y.
        iii) Believing that something does not exist is not necessarily the same as saying there is zero probability of it’s existence. Bertrand Russell did not believe in God but conceded that there is a “bare possibility” (of the same order as believing in Zeus) . Given a non-zero probability of something and a zero or near zero advantage of Y. It’s rational to reject Y.

    2. whencarsfly says:

      I am confused. Are blood donors asked if they have been diagnosed with PTLDS before being able to donate blood?

      1. Bambi Albert says:

        yes, they are now, finally

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